The registry case finding engine: an automated tool to identify cancer cases from unstructured, free-text pathology reports and clinical notes.

PubMed

Hanauer, David A; Miela, Gretchen; Chinnaiyan, Arul M; Chang, Alfred E; Blayney, Douglas W

2007-11-01

The American College of Surgeons mandates the maintenance of a cancer registry for hospitals seeking accreditation. At the University of Michigan Health System, more than 90% of all registry patients are identified by manual review, a method common to many institutions. We hypothesized that an automated computer system could accurately perform this time- and labor-intensive task. We created a tool to automatically scan free-text medical documents for terms relevant to cancer. We developed custom-made lists containing approximately 2,500 terms and phrases and 800 SNOMED codes. Text is processed by the Case Finding Engine (CaFE), and relevant terms are highlighted for review by a registrar and used to populate the registry database. We tested our system by comparing results from the CaFE to those by trained registrars who read through 2,200 pathology reports and marked relevant cases for the registry. The clinical documentation (eg, electronic chart notes) of an additional 476 patients was also reviewed by registrars and compared with the automated process by the CaFE. For pathology reports, the sensitivity for automated case identification was 100%, but specificity was 85.0%. For clinical documentation, sensitivity was 100% and specificity was 73.7%. Types of errors made by the CaFE were categorized to direct additional improvements. Use of the CaFE has resulted in a considerable increase in the number of cases added to the registry each month. The system has been well accepted by our registrars. CaFE can improve the accuracy and efficiency of tumor registry personnel and helps ensure that cancer cases are not overlooked.

[Bedside implantation of a new temporary vena cava inferior filter : German results from the European ANGEL registry].

PubMed

Baumann, S; Becher, T; Giannakopoulos, K; Jabbour, C; Fastner, C; El-Battrawy, I; Ansari, U; Lossnitzer, D; Behnes, M; Alonso, A; Kirschning, T; Dissmann, R; Kueck, O; Stern, D; Michels, G; Borggrefe, M; Akin, I

2018-04-01

Pulmonary embolism (PE) is a frequently occurring complication in critically ill patients, and the simultaneous occurrence of PE and life-threatening bleeding is a therapeutic dilemma. Inferior vena cava filters (IVCF) may represent an important therapeutic alternative in these cases. The Angel® catheter (Bio2 Medical Inc., San Antonio, TX, USA) is a novel IVCF that provides temporary protection from PE and is implanted at bedside without fluoroscopy. The European Angel® Catheter Registry is an observational, multicenter study. In our German substudy, we investigated patients from three German hospitals and four intensive care units, who underwent Angel® catheter implantation between February 2016 and December 2016. A total of 23 critically ill patients (68 ± 9 years, 43% male) were included. The main indication for implantation was a high risk for or an established PE, combined with contraindications for prophylactic or therapeutic anticoagulation due to either an increased risk of bleeding (81%) or active bleeding (13%). The Angel® catheter was successfully inserted in all patients at bedside. No PE occurred in patients with an indwelling Angel® catheter. Clots with a diameter larger the 20 mm, indicating clot migration, were detected in 5% of the patients by cavography before filter retrieval. Filter retrieval was uneventful in all of our cases, while filter dislocation occurred in 3% of the patients. The German data from the multicenter European Angel® Catheter Registry show that the Angel® catheter is a safe and effective approach for critically ill patients with a high risk for the development of PE or an established PE, when an anticoagulation therapy is contraindicated.

Development and validation of a registry-based definition of eosinophilic esophagitis in Denmark

PubMed Central

Dellon, Evan S; Erichsen, Rune; Pedersen, Lars; Shaheen, Nicholas J; Baron, John A; Sørensen, Henrik T; Vyberg, Mogens

2013-01-01

AIM: To develop and validate a case definition of eosinophilic esophagitis (EoE) in the linked Danish health registries. METHODS: For case definition development, we queried the Danish medical registries from 2006-2007 to identify candidate cases of EoE in Northern Denmark. All International Classification of Diseases-10 (ICD-10) and prescription codes were obtained, and archived pathology slides were obtained and re-reviewed to determine case status. We used an iterative process to select inclusion/exclusion codes, refine the case definition, and optimize sensitivity and specificity. We then re-queried the registries from 2008-2009 to yield a validation set. The case definition algorithm was applied, and sensitivity and specificity were calculated. RESULTS: Of the 51 and 49 candidate cases identified in both the development and validation sets, 21 and 24 had EoE, respectively. Characteristics of EoE cases in the development set [mean age 35 years; 76% male; 86% dysphagia; 103 eosinophils per high-power field (eos/hpf)] were similar to those in the validation set (mean age 42 years; 83% male; 67% dysphagia; 77 eos/hpf). Re-review of archived slides confirmed that the pathology coding for esophageal eosinophilia was correct in greater than 90% of cases. Two registry-based case algorithms based on pathology, ICD-10, and pharmacy codes were successfully generated in the development set, one that was sensitive (90%) and one that was specific (97%). When these algorithms were applied to the validation set, they remained sensitive (88%) and specific (96%). CONCLUSION: Two registry-based definitions, one highly sensitive and one highly specific, were developed and validated for the linked Danish national health databases, making future population-based studies feasible. PMID:23382628

Measuring hospital performance in congenital heart surgery: administrative versus clinical registry data.

PubMed

Pasquali, Sara K; He, Xia; Jacobs, Jeffrey P; Jacobs, Marshall L; Gaies, Michael G; Shah, Samir S; Hall, Matthew; Gaynor, J William; Peterson, Eric D; Mayer, John E; Hirsch-Romano, Jennifer C

2015-03-01

In congenital heart surgery, hospital performance has historically been assessed using widely available administrative data sets. Recent studies have demonstrated inaccuracies in case ascertainment (coding and inclusion of eligible cases) in administrative versus clinical registry data; however, it is unclear whether this impacts assessment of performance on a hospital level. Merged data from The Society of Thoracic Surgeons (STS) database (clinical registry) and the Pediatric Health Information Systems (PHIS) database (administrative data set) for 46,056 children undergoing cardiac operations (2006-2010) were used to evaluate in-hospital mortality for 33 hospitals based on their administrative versus registry data. Standard methods to identify/classify cases were used: Risk Adjustment in Congenital Heart Surgery, version 1 (RACHS-1) in the administrative data and STS-European Association for Cardiothoracic Surgery (STAT) methodology in the registry. Median hospital surgical volume based on the registry data was 269 cases per year; mortality was 2.9%. Hospital volumes and mortality rates based on the administrative data were on average 10.7% and 4.7% lower, respectively, although this varied widely across hospitals. Hospital rankings for mortality based on the administrative versus registry data differed by 5 or more rank positions for 24% of hospitals, with a change in mortality tertile classification (high, middle, or low mortality) for 18% and a change in statistical outlier classification for 12%. Higher volume/complexity hospitals were most impacted. Agency for Healthcare Quality and Research (AHRQ) methods in the administrative data yielded similar results. Inaccuracies in case ascertainment in administrative versus clinical registry data can lead to important differences in assessment of hospital mortality rates for congenital heart surgery. Copyright © 2015 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

Role of prospective registries in defining the value and effectiveness of spine care.

PubMed

McGirt, Matthew J; Parker, Scott L; Asher, Anthony L; Norvell, Dan; Sherry, Ned; Devin, Clinton J

2014-10-15

Literature review and case example. Describe methodological considerations of spine surgery registries. Review existing spine surgery registries. Describe the Vanderbilt Prospective Spine Registry (VPSR) as a case example and demonstrate its impact on comparative effectiveness research, value analysis, quality improvement, and practice-based learning. To bend the cost curve and ultimately achieve sustainability in health care, medical providers and surgical treatments of the highest quality and effectiveness must be preferentially used and purchased. As the current US health care environment continues to evolve, it will be essential for all spine clinicians to understand and be facile with the principles of evidence-based health care reform. We describe the methodological considerations of spine surgery registries, review the literature to describe existing spine surgery registries, and discuss the VPSR as a case example. We were able to obtain detailed information on 13 existing spine surgery registries through various internet-based resources. Of the 13, 2 registries had start dates before 2000, 3 between 2001 and 2005, 5 starting in 2006, and 3 were indeterminate. Follow-up rates were in the range from 22% to 79%, with longer follow-up times consistently producing lower follow-up rates. Prospective, longitudinal, patient-reported outcomes registries are powerful tools that allow measurement of cost, safety, effectiveness, and health care value across clinically meaningful episodes of care. Registries entirely based on claims or billing data, safety measures alone, process measures, or other proxies of outcome offer valuable insights, but do not provide comprehensive data to drive patient-centered value-based reform. As more spine-focused registries emerge and their integration into the US health care delivery evolve, the evidence to power value-based reform will be enabled.

Childhood cancer registration in New Zealand: A registry collaboration to assess and improve data quality.

PubMed

Ballantine, Kirsten R; Hanna, Susan; Macfarlane, Scott; Bradbeer, Peter; Teague, Lochie; Hunter, Sarah; Cross, Siobhan; Skeen, Jane

2018-06-11

To evaluate the completeness and accuracy of child cancer registration in New Zealand. Registrations for children aged 0-14 diagnosed between 1/1/2010 and 31/12/2014 were obtained from the New Zealand Cancer Registry (NZCR) and the New Zealand Children's Cancer Registry (NZCCR). Six key data fields were matched using National Health Index numbers in order to identify and resolve registration discrepancies. Capture-recapture methods were used to assess the completeness of cancer registration. 794 unique cases were reported; 718 from the NZCR, 721 from the NZCCR and 643 from both registries. 27 invalid cancer registrations were identified, including 19 residents of the Pacific Islands who had travelled to New Zealand for treatment. The NZCCR provided 55 non-malignant central nervous system tumour and 16 Langerhans cell histiocytosis cases which were not registered by the NZCR. The NZCR alerted the NZCCR to 18 cases missed due to human error and 23 cases that had not been referred to the specialist paediatric oncology centres. 762 cases were verified as true incident cases, an incidence rate of 166.8 per million. Registration accuracy for six key data fields was 98.6%. According to their respective inclusion criteria case completeness was 99.3% for the NZCR and 94.4% for the NZCCR. For childhood malignancies covered by both registries, capture-recapture methods estimated case ascertainment at greater than 99.9%. With two national registries covering childhood cancers, New Zealand is uniquely positioned to undertake regular cooperative activities to ensure high quality data is available for research and patient care. Copyright © 2018 Elsevier Ltd. All rights reserved.

Australia and New Zealand Islets and Pancreas Transplant Registry Annual Report 2017—Pancreas Waiting List, Recipients, and Donors

PubMed Central

Webster, Angela C; Hedley, James; Patekar, Abhijit; Robertson, Paul; Kelly, Patrick J

2017-01-01

Abstract This is a registry report from the Australia and New Zealand Islet and Pancreas Transplant Registry. We report data for all solid organ pancreas transplant activity from inception in 1984 to end of 2016. Data analysis was performed using Stata Software version 14 (StataCorp, College Station, Tex). From 1984 to 2016 a total of 756 solid organ pancreas transplants have been performed in Australia and New Zealand, in 738 individuals. In 2016, 55 people received a pancreas transplant. These transplants were performed in Auckland (4), Monash (22), and Westmead (29). In 2016, 50 transplants were simultaneous pancreas kidney, 4 were pancreas after kidney, and 1 was a pancreas transplant alone. PMID:29026874

Examining the challenges of family recruitment to behavioral intervention trials: factors associated with participation and enrollment in a multi-state colonoscopy intervention trial

PubMed Central

2013-01-01

Background Colonoscopy is one of the most effective methods of cancer prevention and detection, particularly for individuals with familial risk. Recruitment of family members to behavioral intervention trials remains uniquely challenging, owing to the intensive process required to identify and contact them. Recruiting at-risk family members involves contacting the original cancer cases and asking them to provide information about their at-risk relatives, who must then be contacted for study enrollment. Though this recruitment strategy is common in family trials, few studies have compared influences of patient and relative participation to nonparticipation. Furthermore, although use of cancer registries to identify initial cases has increased, to our knowledge no study has examined the relationship between registries and family recruitment outcomes. Methods This study assessed predictors of case participation and relative enrollment in a recruitment process that utilized state cancer registries. Participation characteristics were analyzed with separate multivariable logistic regressions in three stages: (1) cancer registry-contacted colorectal cancer (CRC) cases who agreed to study contact; (2) study-contacted CRC cases who provided at-risk relative information; and (3) at-risk relatives contacted for intervention participation. Results Cancer registry source was predictive of participation for both CRC cases and relatives, though relative associations (odds ratios) varied across registries. Cases were less likely to participate if they were Hispanic or nonwhite, and were more likely to participate if they were female or younger than 50 at cancer diagnosis. At-risk relatives were more likely to participate if they were from Utah, if another family member was also participating in the study, or if they had previously had a colonoscopy. The number of eligible cases who had to be contacted to enroll one eligible relative varied widely by registry, from 7 to 81. Conclusions Family recruitment utilizing cancer registry-identified cancer cases is feasible, but highly dependent on both the strategies and protocols of those who are recruiting and on participant characteristics such as sex, race, or geography. Devising comprehensive recruitment protocols that specifically target those less likely to enroll may help future research meet recruitment goals. Trial registration Family Colorectal Cancer Awareness and Risk Education Project NCT01274143. PMID:23782890

Breast cancer age at diagnosis patterns in four Latin American Populations: A comparison with North American countries.

PubMed

Franco-Marina, Francisco; López-Carrillo, Lizbeth; Keating, Nancy L; Arreola-Ornelas, Hector; Marie Knaul, Felicia

2015-12-01

In the Latin America countries (LAC), one in five breast cancer (BC) cases occur in women younger than 45 years, almost twice the frequency seen in developed countries. Most BC cases in younger women are premenopausal and are generally more difficult to detect at early stages and to treat than postmenopausal cancers. We employ data from four high quality population-based registries located in LAC and assess the extent to which the higher frequency of BC occurring in younger women is due to a younger population structure, compared to that of developed countries. Next, we analyze secular and generational trends of incidence rates in search for additional explanations. Using data from the International Agency for Research on cancer, between 1988 and 2007, the age distribution of BC incident cases for registries located in Brazil, Colombia, Costa Rica, Ecuador is compared to that of USA and Canadian registries, both before and after removing differences in population age structure. An age-period-cohort modelling of incidence rates is also conducted in all compared registries to identify secular and generational effects. BC incident cases in the LAC registries present, on average, at an earlier age than in the USA and Canadian registries and for 2003-2007, between 20 and 27% of cases occur in women aged 20-44. About two thirds of the difference in age distribution between LAC and USA registries is attributable to the younger age distribution in the LAC base populations. The USA registries show the highest age-specific BC incidence rates of all compared aggregated registries, at all ages. However, in all the LAC registries incidence rates are rapidly increasing, fueled by a strong birth cohort effect. This cohort effect may be explained by important reduction in fertility rates occurring during the second half of the 20th century, but also by a greater exposure to other risk factors for BC related to the adoption of life styles more prevalent in developed countries. The younger age at presentation of BC incident cases seen in the analyzed LAC registries, and possibly in many Latin American countries, is not only attributable to their relatively young population age structure but also to the low incidence rates in older women. As more recently born cohorts, with greater exposure to risk factors for postmenopausal BC, reach older age, incidence rates will be more similar to the rates seen in the USA and Canadian registries. There is a need for additional research to identify determinants of the higher BC rate among younger women in these countries. Copyright © 2015 Elsevier Ltd. All rights reserved.

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection☆

PubMed Central

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2018-01-01

Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $ = 60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. PMID:27726981

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection.

PubMed

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2016-12-01

The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. Copyright © 2016 Elsevier Ltd. All rights reserved.

75 FR 29550 - Proposed Data Collections Submitted for Public Comment and Recommendations

Federal Register 2010, 2011, 2012, 2013, 2014

2010-05-26

... incidence data to CDC on an annual basis (OMB No. 0920- 0469, exp. 1/31/2010). In addition, NPCR-funded... widely from registry to registry, and registries differ greatly in the number of incidence cases that...

Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study.

PubMed

Linkins, Robert W; Salmon, Daniel A; Omer, Saad B; Pan, William Ky; Stokley, Shannon; Halsey, Neal A

2006-09-22

Immunizations have reduced childhood vaccine preventable disease incidence by 98-100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0%) than vaccinated children (26.5%) (p value = 0.01). A substantial proportion of parents of exempt children support immunization registries, particularly if registries offer choice for participation. Few parents of vaccinated (6.8%) and exempt children (6.7%) were aware of laws authorizing immunization registries. Support for laws authorizing registries and requiring health care providers to report to registries was more common among parents of vaccinated than exempt children. Most parents believed that the government, vaccine companies or insurance companies should pay for registries. Parental support for registries was relatively high. Parental support for immunization registries may increase with greater parental awareness of the risks of vaccine preventable diseases and utility of vaccination.

Child Abuse and Neglect United States Army U.S. Army Central Registry (1989-1996)

DTIC Science & Technology

1998-03-31

This report is an analysis of the child abuse and neglect cases that have been recorded in the Army Central Registry between 1989-1996. The following...were 30,551 initial substantiated cases of child abuse and neglect, or an average of about 3,80 cases per year. There were 2,336 subsequent incidents

The utility of international shoulder joint replacement registries and databases: a comparative analytic review of two hundred and sixty one thousand, four hundred and eighty four cases.

PubMed

Bayona, Carlos Eduardo Afanador; Somerson, Jeremy S; Matsen, Frederick A

2018-02-01

National registries are valuable tools for understanding the results of shoulder arthroplasty across populations. These databases provide an unselected view of shoulder joint replacement within geographical areas that cannot be obtained from case series or prospective studies. They can be particularly helpful in determining which diagnoses, patients, procedures, and prostheses have higher than expected rates of revision. In an attempt to determine the generalizability of registry data, we asked, 'how similar are the patients and procedures among the different national registries?' We analyzed national shoulder arthroplasty registries and databases accessed via Internet portals and through a PubMed literature search. Seven national/regional registries and five publications regarding national shoulder arthroplasty data were identified; these sources contained a combined total of 261,484 shoulder arthroplasty cases. The percentages of hemiarthroplasty, anatomic (aTSA) and reverse total shoulders (rTSA), the diagnoses leading to arthroplasty, the mean patient age, and the distribution of patient gender varied significantly among these different databases. This study indicates that the indications for and application of shoulder arthroplasty have important geographical variations and that these variations must be considered when comparing outcomes of shoulder arthroplasty from different locations. Without controlling for age, gender, diagnosis and procedure type, the results from one national registry may not be applicable to patients from a different location. In that national data provide the opportunity to reduce costs by identifying implants and procedures with higher failure rates, the funding of registries needs to be free of conflicts of interest.

Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

PubMed

da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V

2013-01-01

The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate data integration between healthcare and research settings, also being a useful framework to be used in other biomedical registries.

75 FR 38673 - Federal Acquisition Regulation; Federal Acquisition Circular 2005-43; Introduction

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-02

... Web site at http://www.fema.gov/business/contractor.shtm . The Registry covers domestic disaster and... Analyst I Government Property.... 2008-011 Parnell II......... Registry of Disaster 2008-035 Gary Response...--Registry of Disaster Response Contractors (FAR Case 2008-035) This final rule adopts, without change, the...

75 FR 38683 - Federal Acquisition Regulation; FAR Case 2008-035, Registry of Disaster Response Contractors

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-02

... Response Contractors AGENCIES: Department of Defense (DoD), General Services Administration (GSA), and... of a registry of disaster response contractors. DATES: Effective Date: August 2, 2010. FOR FURTHER..., requires the establishment and maintenance of a registry of contractors willing to perform debris removal...

Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study

PubMed Central

Linkins, Robert W; Salmon, Daniel A; Omer, Saad B; Pan, William KY; Stokley, Shannon; Halsey, Neal A

2006-01-01

Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0%) than vaccinated children (26.5%) (p value = 0.01). A substantial proportion of parents of exempt children support immunization registries, particularly if registries offer choice for participation. Few parents of vaccinated (6.8%) and exempt children (6.7%) were aware of laws authorizing immunization registries. Support for laws authorizing registries and requiring health care providers to report to registries was more common among parents of vaccinated than exempt children. Most parents believed that the government, vaccine companies or insurance companies should pay for registries. Conclusion Parental support for registries was relatively high. Parental support for immunization registries may increase with greater parental awareness of the risks of vaccine preventable diseases and utility of vaccination. PMID:16995946

Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.

PubMed

Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S

2015-12-01

The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data. Copyright © 2015 Elsevier Ltd. All rights reserved.

RENAC: National Registry of Congenital Anomalies of Argentina.

PubMed

Groisman, Boris; Bidondo, María Paz; Barbero, Pablo; Gili, Juan A; Liascovich, Rosa

2013-12-01

The National Registry of Congenital Anomalies (Registro Nacional de Anomalías Congénitas, RENAC) is a hospital-based surveillance system for newborn infants with major morphological congenital anomalies (CAs). The objective of this study was to describe the characteristics and operation of the RENAC registry and the prevalence at birth of 56 specifc selected CAs, compared to other registries. The organization of the RENAC registry was initiated in public hospitals with 1000 or more births per year or which are the referral hospitals in a determined health region. Neonatologists are in charge of data collection, and a central coordination department is in charge of encoding, statistical analyses and regular reports. The RENAC registry uses an online forum for data submission and for guidance and interaction regarding the initial management of cases. Between November 1st, 2009 and June 30th, 2012, 98 hospitals were included in the registry, the annual coverage of these hospitals is 65% in the public sector and 35% of births in Argentina. In this period, 294 005 newborn infants were examined, and 5165 cases with major CAs were detected (1.76%; 95% CI: 1.71-1.80). The most frequent CAs were septal heart defects (prevalence per 10 000: 28.6), Down's syndrome (prevalence per 10 000: 19.2), cleft lip +/- palate (prevalence per 10 000: 12), and a set of neural tube defects (prevalence per 10 000: 11.9). The RENAC has reached a high coverage in the public sector and the differences in prevalence with other registries can be related to operational aspects or actual differences, depending on the case. The RENAC deals with the collection, analysis and dissemination of information about CAs in Argentina, and also contributes with local interventions.

75 FR 38691 - Federal Acquisition Regulation; Federal Acquisition Circular 2005-43; Small Entity Compliance Guide

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-02

............ 2008-011 Parnell II Registry of Disaster 2008-035 Gary Response Contractors. III Recovery Act... rule. Item II--Registry of Disaster Response Contractors (FAR Case 2008-035) This final rule adopts... Appropriations Act, 2007, section 697, which requires the establishment and maintenance of a registry of disaster...

The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types.

PubMed

Agha, Riaz; Fowler, Alexander J; Limb, Christopher; Al Omran, Yasser; Sagoo, Harkiran; Koshy, Kiron; Jafree, Daniyal J; Anwar, Mohammed Omer; McCullogh, Peter; Orgill, Dennis Paul

2016-01-01

The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry ® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry ® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry ® . Since the launch of Research Registry ® in February 2015, data of registrations have been collected, including type of studies registered, country of origin, and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Sir Austin Bradford Hill's criteria on what research studies should convey. Changes in quality scores over time were assessed. A total of 500 studies were registered on Research Registry ® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%), case series (14.8%), and first-in-man case reports (10.4%). Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 ( p  < 0.0001). Since its conception in February 2015, Research Registry ® has established itself as a new registry that is free, easy to use, and enables the registration of various study types, including observational studies and first-in-man case reports. Going forward, our plan is to continue developing Research Registry ® in line with user feedback and usability studies. We plan to further promote Research Registry ® to advance the cause of registration of research, to increase compliance with the Declaration of Helsinki 2013.

Clinical disease registries in acute myocardial infarction.

PubMed

Ashrafi, Reza; Hussain, Hussain; Brisk, Robert; Boardman, Leanne; Weston, Clive

2014-06-26

Disease registries, containing systematic records of cases, have for nearly 100 years been valuable in exploring and understanding various aspects of cardiology. This is particularly true for myocardial infarction, where such registries have provided both epidemiological and clinical information that was not readily available from randomised controlled trials in highly-selected populations. Registries, whether mandated or voluntary, prospective or retrospective in their analysis, have at their core a common study population and common data definitions. In this review we highlight how registries have diversified to offer information on epidemiology, risk modelling, quality assurance/improvement and original research-through data mining, transnational comparisons and the facilitation of enrolment in, and follow-up during registry-based randomised clinical trials.

The History and Use of Cancer Registry Data by Public Health Cancer Control Programs in the United States

PubMed Central

White, Mary C.; Babcock, Frances; Hayes, Nikki S.; Mariotto, Angela B.; Wong, Faye L.; Kohler, Betsy A.; Weir, Hannah K.

2018-01-01

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. PMID:29205307

Validation of diagnosis of aplastic anaemia in La Rioja (Spain) by International Classification of Diseases codes for case ascertainment for the Spanish National Rare Diseases Registry.

PubMed

Ruiz, Elena; Ramalle-Gómara, Enrique; Quiñones, Carmen; Rabasa, Pilar; Pisón, Carlos

2015-05-01

To analyse the validity of diagnosis of aplastic anaemia (AA) by International Classification of Diseases codes in hospital discharge data (MBDS) and the mortality registry (MR) of La Rioja to detect cases to be included in the Spanish National Rare Diseases Registry. International Classification of Diseases (ICD) codes were used to detect AA cases during the period 2007-2012 from two administrative databases: the MBDS and the MR of La Rioja (Spain). Medical records of population selected by merging both databases were used to confirm true AA cases. The annual mean incidence rate of AA was calculated using confirmed incident cases. By merging both databases, 62 hypothetical AA incident patients were detected during the period 2007-2012. The medical records of the 89% of them could be revised, and they confirmed that only the 15% of the patients actually suffered AA. The annual mean AA incidence in La Rioja was 4.17 per million inhabitants (6.23 per million, males; 2.10 per million, females). The MBDS and the MR are not in themselves sufficient to ascertain AA cases in La Rioja and medical records should be reviewed to confirm true AA cases to be included in the Spanish National Rare Diseases Registry. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

PubMed Central

da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.

2013-01-01

Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate data integration between healthcare and research settings, also being a useful framework to be used in other biomedical registries. PMID:23936257

Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries☆

PubMed Central

Tangka, Florence K.L.; Subramanian, Sujha; Edwards, Patrick; Cole-Beebe, Maggie; Parkin, D. Maxwell; Bray, Freddie; Joseph, Rachael; Mery, Les; Saraiya, Mona

2018-01-01

Background The key aims of this study were to identify sources of support for cancer registry activities, to quantify resource use and estimate costs to operate registries in low- and middle-income countries (LMIC) at different stages of development across three continents. Methods Using the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool), cost and resource use data were collected from eight population-based cancer registries, including one in a low-income country (Uganda [Kampala)]), two in lower to middle-income countries (Kenya [Nairobi] and India [Mumbai]), and five in an upper to middle-income country (Colombia [Pasto, Barranquilla, Bucaramanga, Manizales and Cali cancer registries]). Results Host institution contributions accounted for 30%–70% of total investment in cancer registry activities. Cancer registration involves substantial fixed cost and labor. Labor accounts for more than 50% of all expenditures across all registries. The cost per cancer case registered in low-income and lower-middle-income countries ranged from US $3.77 to US $15.62 (United States dollars). In Colombia, an upper to middle-income country, the cost per case registered ranged from US $41.28 to US $113.39. Registries serving large populations (over 15 million inhabitants) had a lower cost per inhabitant (less than US $0.01 in Mumbai, India) than registries serving small populations (under 500,000 inhabitants) [US $0.22] in Pasto, Colombia. Conclusion This study estimates the total cost and resources used for cancer registration across several countries in the limited-resource setting, and provides cancer registration stakeholders and registries-with opportunities to identify cost savings and efficiency improvements. Our results suggest that cancer registration involve substantial fixed costs and labor, and that partnership with other institutions is critical for the operation and sustainability of cancer registries in limited resource settings. Although we included registries from a variety of limited-resource areas, information from eight registries in four countries may not be large enough to capture all the potential differences among the registries in limited-resource settings. PMID:27793574

Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries.

PubMed

Tangka, Florence K L; Subramanian, Sujha; Edwards, Patrick; Cole-Beebe, Maggie; Parkin, D Maxwell; Bray, Freddie; Joseph, Rachael; Mery, Les; Saraiya, Mona

2016-12-01

The key aims of this study were to identify sources of support for cancer registry activities, to quantify resource use and estimate costs to operate registries in low- and middle-income countries (LMIC) at different stages of development across three continents. Using the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool), cost and resource use data were collected from eight population-based cancer registries, including one in a low-income country (Uganda [Kampala)]), two in lower to middle-income countries (Kenya [Nairobi] and India [Mumbai]), and five in an upper to middle-income country (Colombia [Pasto, Barranquilla, Bucaramanga, Manizales and Cali cancer registries]). Host institution contributions accounted for 30%-70% of total investment in cancer registry activities. Cancer registration involves substantial fixed cost and labor. Labor accounts for more than 50% of all expenditures across all registries. The cost per cancer case registered in low-income and lower-middle-income countries ranged from US $3.77 to US $15.62 (United States dollars). In Colombia, an upper to middle-income country, the cost per case registered ranged from US $41.28 to US $113.39. Registries serving large populations (over 15 million inhabitants) had a lower cost per inhabitant (less than US $0.01 in Mumbai, India) than registries serving small populations (under 500,000 inhabitants) [US $0.22] in Pasto, Colombia. This study estimates the total cost and resources used for cancer registration across several countries in the limited-resource setting, and provides cancer registration stakeholders and registries with opportunities to identify cost savings and efficiency improvements. Our results suggest that cancer registration involve substantial fixed costs and labor, and that partnership with other institutions is critical for the operation and sustainability of cancer registries in limited resource settings. Although we included registries from a variety of limited-resource areas, information from eight registries in four countries may not be large enough to capture all the potential differences among the registries in limited-resource settings. Copyright © 2016 Elsevier Ltd. All rights reserved.

[Record linkage of a large clinical practice patient cohort with the Cancer Registry Schleswig-Holstein].

PubMed

Obi, N; Waldmann, A; Babaev, V; Katalinic, A

2011-07-01

A precondition for the evaluation of outcomes in cohort studies and screening programmes is the availability of follow-up data. In Germany, established cancer registries provide such data for incident primary cancer diseases and mortality. To utilise these cancer registry data a person's identifying code has to be correctly linked to study or programme records, a procedure which, up to date, has been only rarely used in Germany. Exemplarily, the feasibility and validity of record linkage of a cohort of 173 050 patients from the Quality-assured Mamma Diagnostic programme (QuaMaDi) to the cancer registry Schleswig-Holstein was assessed by the accuracy of the classified outcome. Name, date of birth and address of the QuaMaDi cohort members were coded in the confidential administration center of the registry. These codes were passed by the codes of 129 455 female cancer registry records. Datasets were synchronised for each match, so that QuaMaDi participants could be identified in the registry file. In a next step epidemiological registry records were linked to the QuaMaDi study records. The accuracy of classifying outcome was assessed by agreement measures, i. e., Cohen's kappa. In cases of disagreement, a questionnaire has been sent to QuaMaDi patients' gynaecologists to validate the final diagnosis. Synchronisation of both cohorts resulted in 18 689 one to one matches with any kind of malignant tumour, therein 8 449 breast cancers (ICD-10 C50, D05). Absolute agreement between files according to diagnosed or suspected breast cancer was 97.6% with a kappa value of 0.79. When suspicious BIRADS 4 cases from QuaMaDi were excluded, agreement and kappa rose to 99.5% and 0.948, respectively. After correction of the final diagnosis according to the physician's responses, agreement measures slightly improved in both groups of ascertained diagnosis including and excluding the suspected cases. Within QuaMaDi the diagnosed breast cancer cases were predominantly notified in the cancer registry. Discordant matches (false negatives and false positives) may have resulted due to various causes, thereof a very low percentage of record linkages from different persons. In conclusion, synchronisation of study cohort files to registry files using pseudonymous personal data is feasible and valid. The generated combined datasets can be used for comparative analysis of several objectives. One of them will be the evaluation of screening programmes in the near future. © Georg Thieme Verlag KG Stuttgart · New York.

Assessment of follow-up, and the completeness and accuracy of cancer case ascertainment in three areas of India

PubMed Central

Mathew, Aleyamma; Daniel, Carrie R.; Ferrucci, Leah M.; Seth, Tulika; Devesa, Susan S.; George, Preethi S.; Shetty, Hemali; Devasenapathy, Niveditha; Yurgalevitch, Susan; Rastogi, Tanuja; Prabhakaran, Dorairaj; Gupta, Prakash C.; Chatterjee, Nilanjan; Sinha, Rashmi

2012-01-01

Background A prospective study of diet and cancer has not been conducted in India; consequently, little is known regarding follow-up rates or the completeness and accuracy of cancer case ascertainment. Methods We assessed follow-up in the India Health Study (IHS; 4,671 participants aged 35–69 residing in New Delhi, Mumbai, or Trivandrum). We evaluated the impact of medical care access and relocation, re-contacted the IHS participants to estimate follow-up rates, and conducted separate studies of cancer cases to evaluate registry coverage (604 cases in Trivandrum) and the accuracy of self- and proxy-reporting (1600 cases in New Delhi and Trivandrum). Results Over 97% of people reported seeing a doctor and 85% had lived in their current residence for over six years. The 2-year follow-up rate was 91% for Trivandrum and 53% for New Delhi. No cancer cases were missed among public institutions participating in the surveillance program in Trivandrum during 2003–04; but there are likely to be unmatched cases (ranging from 5 to13% of total cases) from private hospitals in the Trivandrum registry, as there are no mandatory reporting requirements. Vital status was obtained for 36% of cancer cases in New Delhi as compared to 78% in Trivandrum after a period of 4 years. Conclusions A prospective cohort study of cancer may be feasible in some centers in India with active follow-up to supplement registry data. Inclusion of cancers diagnosed at private institutions, unique identifiers for individuals, and computerized medical information would likely improve cancer registries. PMID:21621499

Attention deficit/hyperactivity disorder and childhood autism in association with prenatal exposure to perfluoroalkyl substances: a nested case-control study in the Danish National Birth Cohort.

PubMed

Liew, Zeyan; Ritz, Beate; von Ehrenstein, Ondine S; Bech, Bodil Hammer; Nohr, Ellen Aagaard; Fei, Chunyuan; Bossi, Rossana; Henriksen, Tine Brink; Bonefeld-Jørgensen, Eva Cecilie; Olsen, Jørn

2015-04-01

Perfluoroalkyl substances (PFASs) are persistent pollutants found to be endocrine disruptive and neurotoxic in animals. Positive correlations between PFASs and neurobehavioral problems in children were reported in cross-sectional data, but findings from prospective studies are limited. We investigated whether prenatal exposure to PFASs is associated with attention deficit/hyperactivity disorder (ADHD) or childhood autism in children. Among 83,389 mother-child pairs enrolled in the Danish National Birth Cohort during 1996-2002, we identified 890 ADHD cases and 301 childhood autism cases from the Danish National Hospital Registry and the Danish Psychiatric Central Registry. From this cohort, we randomly selected 220 cases each of ADHD and autism, and we also randomly selected 550 controls frequency matched by child's sex. Sixteen PFASs were measured in maternal plasma collected in early or mid-pregnancy. We calculated risk ratios (RRs) using generalized linear models, taking into account sampling weights. Perfluorooctane sulfonate (PFOS) and perfluorooctanoic acid (PFOA) were detected in all samples; four other PFASs were quantified in ≥ 90% of the samples. We did not find consistent evidence of associations between mother's PFAS plasma levels and ADHD [per natural log nanograms per milliliter increase: PFOS RR = 0.87 (95% CI: 0.74, 1.02); PFOA RR = 0.98 (95% CI: 0.82, 1.16)] or autism [per natural log nanograms per milliliter increase: PFOS RR = 0.92 (95% CI: 0.69, 1.22); PFOA RR = 0.98 (95% CI: 0.73, 1.31)]. We found positive as well as negative associations between higher PFAS quartiles and ADHD in models that simultaneously adjusted for all PFASs, but these estimates were imprecise. In this study we found no consistent evidence to suggest that prenatal PFAS exposure increases the risk of ADHD or childhood autism in children.

Novel associations in disorders of sex development: findings from the I-DSD Registry.

PubMed

Cox, Kathryn; Bryce, Jillian; Jiang, Jipu; Rodie, Martina; Sinnott, Richard; Alkhawari, Mona; Arlt, Wiebke; Audi, Laura; Balsamo, Antonio; Bertelloni, Silvano; Cools, Martine; Darendeliler, Feyza; Drop, Stenvert; Ellaithi, Mona; Guran, Tulay; Hiort, Olaf; Holterhus, Paul-Martin; Hughes, Ieuan; Krone, Nils; Lisa, Lidka; Morel, Yves; Soder, Olle; Wieacker, Peter; Ahmed, S Faisal

2014-02-01

The focus of care in disorders of sex development (DSD) is often directed to issues related to sex and gender development. In addition, the molecular etiology remains unclear in the majority of cases. To report the range of associated conditions identified in the international DSD (I-DSD) Registry. Anonymized data were extracted from the I-DSD Registry for diagnosis, karyotype, sex of rearing, genetic investigations, and associated anomalies. If necessary, clarification was sought from the reporting clinician. Of 649 accessible cases, associated conditions occurred in 168 (26%); 103 (61%) cases had one condition, 31 (18%) had two conditions, 20 (12%) had three conditions, and 14 (8%) had four or more conditions. Karyotypes with most frequently reported associations included 45,X with 6 of 8 affected cases (75%), 45,X/46,XY with 19 of 42 cases (45%), 46,XY with 112 of 460 cases (24%), and 46,XX with 27 of 121 cases (22%). In the 112 cases of 46,XY DSD, the commonest conditions included small for gestational age in 26 (23%), cardiac anomalies in 22 (20%), and central nervous system disorders in 22 (20%), whereas in the 27 cases of 46,XX DSD, skeletal and renal anomalies were commonest at 12 (44%) and 8 (30%), respectively. Of 170 cases of suspected androgen insensitivity syndrome, 19 (11%) had reported anomalies and 9 of these had confirmed androgen receptor mutations. Over a quarter of the cases in the I-DSD Registry have an additional condition. These associations can direct investigators toward novel genetic etiology and also highlight the need for more holistic care of the affected person.

Acute heart failure: perspectives from a randomized trial and a simultaneous registry.

PubMed

Ezekowitz, Justin A; Hu, Jia; Delgado, Diego; Hernandez, Adrian F; Kaul, Padma; Leader, Rolland; Proulx, Guy; Virani, Sean; White, Michel; Zieroth, Shelley; O'Connor, Christopher; Westerhout, Cynthia M; Armstrong, Paul W

2012-11-01

Randomized controlled trials (RCT) are limited by their generalizability to the broader nontrial population. To provide a context for Acute Study of Nesiritide in Decompensated Heart Failure (ASCEND-HF) trial, we designed a complementary registry to characterize clinical characteristics, practice patterns, and in-hospital outcomes of acute heart failure patients. Eligible patients for the registry included those with a principal diagnosis of acute heart failure (ICD-9-CM 402 and 428; ICD-10 I50.x, I11.0, I13.0, I13.2) from 8 sites participating in ASCEND-HF (n=697 patients, 2007-2010). Baseline characteristics, treatments, and hospital outcomes from the registy were compared with ASCEND-HF RCT patients from 31 Canadian sites (n=465, 2007-2010). Patients in the registry were older, more likely to be female, and have chronic respiratory disease, less likely to have diabetes mellitus: they had a similar incidence of ischemic HF, atrial fibrillation, and similar B-type natriuretic peptide levels. Registry patients had higher systolic blood pressure (registry: median 132 mm Hg [interquartile range 115-151 mm Hg]; RCT: median 120 mm Hg [interquartile range 110-135 mm Hg]) and ejection fraction (registry: median 40% [interquartile range 27-58%]; RCT: median 29% [interquartile range 20-40 mm Hg]) than RCT patients. Registry patients presented more often via ambulance and had a similar total length of stay as RCT patients. In-hospital mortality was significantly higher in the registry compared with the RCT patients (9.3% versus 1.3%,P<0.001), and this remained after multivariable adjustment (odds ratio 6.6, 95% CI 2.6-16.8, P<0.001). Patients enrolled in a large RCT of acute heart failure differed significantly based on clinical characteristics, treatments, and inpatient outcomes from contemporaneous patients participating in a registry. These results highlight the need for context of RCTs to evaluate generalizability of results and especially the need to improve clinical outcomes in acute heart failure. URL: http://www.clinicaltrials.gov. Unique identifier: NCT00475852.

Data Quality in Rare Diseases Registries.

PubMed

Kodra, Yllka; Posada de la Paz, Manuel; Coi, Alessio; Santoro, Michele; Bianchi, Fabrizio; Ahmed, Faisal; Rubinstein, Yaffa R; Weinbach, Jérôme; Taruscio, Domenica

2017-01-01

In the field of rare diseases, registries are considered power tool to develop clinical research, to facilitate the planning of appropriate clinical trials, to improve patient care and healthcare planning. Therefore high quality data of rare diseases registries is considered to be one of the most important element in the establishment and maintenance of a registry. Data quality can be defined as the totality of features and characteristics of data set that bear on its ability to satisfy the needs that result from the intended use of the data. In the context of registries, the 'product' is data, and quality refers to data quality, meaning that the data coming into the registry have been validated, and ready for use for analysis and research. Determining the quality of data is possible through data assessment against a number of dimensions: completeness, validity; coherence and comparability; accessibility; usefulness; timeliness; prevention of duplicate records. Many others factors may influence the quality of a registry: development of standardized Case Report Form and security/safety controls of informatics infrastructure. With the growing number of rare diseases registries being established, there is a need to develop a quality validation process to evaluate the quality of each registry. A clear description of the registry is the first step when assessing data quality or the registry evaluation system. Here we report a template as a guide for helping registry owners to describe their registry.

Using a statistical process control chart during the quality assessment of cancer registry data.

PubMed

Myles, Zachary M; German, Robert R; Wilson, Reda J; Wu, Manxia

2011-01-01

Statistical process control (SPC) charts may be used to detect acute variations in the data while simultaneously evaluating unforeseen aberrations that may warrant further investigation by the data user. Using cancer stage data captured by the Summary Stage 2000 (SS2000) variable, we sought to present a brief report highlighting the utility of the SPC chart during the quality assessment of cancer registry data. Using a county-level caseload for the diagnosis period of 2001-2004 (n=25,648), we found the overall variation of the SS2000 variable to be in control during diagnosis years of 2001 and 2002, exceeded the lower control limit (LCL) in 2003, and exceeded the upper control limit (UCL) in 2004; in situ/localized stages were in control throughout the diagnosis period, regional stage exceeded UCL in 2004, and distant stage exceeded the LCL in 2001 and the UCL in 2004. Our application of the SPC chart with cancer registry data illustrates that the SPC chart may serve as a readily available and timely tool for identifying areas of concern during the data collection and quality assessment of central cancer registry data.

The development of registries for surveillance of adult lead exposure, 1981 to 1992.

PubMed

Baser, M E

1992-08-01

Since 1981, 15 states have established registries for surveillance of adult lead absorption, primarily based on reports of elevated blood lead levels from clinical laboratories. I review the status of the registries and recommend steps for further development. Companies reported to the New York registry are compared with those cited by the Occupational Safety and Health Administration (OSHA). I present data on US workers and plants with potential lead exposures and blood tests, as well as review registries' reporting requirements. Registries identify many companies not cited by the Occupational Safety and Health Administration, but underreporting occurs because (1) reporting is usually not required from laboratories outside the state, (2) most registries use a blood lead reporting level of 1.21 mumol/L, which excludes many exposed workers, and (3) many companies with potential exposures do not have routine monitoring programs. Registries' reporting requirements and procedures should be standardized, including a blood lead reporting level of 0.72 mumol/L. Elevated blood lead levels should be a reportable condition nationwide, and a comprehensive national surveillance system should be established: clinical laboratories should be required to report cases to those states with lead registries or directly to the national adult lead registry.

The Kaiser Permanente shoulder arthroplasty registry: results from 6,336 primary shoulder arthroplasties.

PubMed

Dillon, Mark T; Ake, Christopher F; Burke, Mary F; Singh, Anshuman; Yian, Edward H; Paxton, Elizabeth W; Navarro, Ronald A

2015-06-01

Shoulder arthroplasty is being performed in the United States with increasing frequency. We describe the medium-term findings from a large integrated healthcare system shoulder arthroplasty registry. Shoulder arthroplasty cases registered between January 2005 and June 2013 were included for analysis. The registry included patient characteristics, surgical information, implant data, attrition, and patient outcomes such as surgical site infections, venous thromboembolism, and revision procedures. During the study period, 6,336 primary cases were registered. Median follow-up time for all primaries was 3.3 years; 461 cases were lost to follow-up by ending of health plan membership. Primary cases were predominantly female (56%) and white (81%), with an average age of 70 years. The most common reason for surgery was osteoarthritis in 60% of cases, followed by acute fracture (17%) and rotator cuff tear arthropathy (15%). In elective shoulder arthroplasty procedures, 200 all-cause revisions (4%) were reported, with glenoid wear being the most common reason. Most arthroplasties were elective procedures: over half performed for osteoarthritis. Glenoid wear was the most common reason for revision of primary shoulder arthroplasty in elective cases.

Evaluation of the national tuberculosis surveillance program in Haiti

PubMed Central

Salyer, S. J.; Fitter, D. L.; Milo, R.; Blanton, C.; Ho, J. L.; Geffrard, H.; Morose, W.; Marston, B. J.

2015-01-01

OBJECTIVE To assess the quality of tuberculosis (TB) surveillance in Haiti, including whether underreporting from facilities to the national level contributes to low national case registration. METHODS We collected 2010 and 2012 TB case totals, reviewed laboratory registries, and abstracted individual TB case reports from 32 of 263 anti-tuberculosis treatment facilities randomly selected after stratification/weighting toward higher-volume facilities. We compared site results to national databases maintained by a non-governmental organization partner (International Child Care [ICC]) for 2010 and 2012, and the National TB Program (Programme National de Lutte contre la Tuberculose, PNLT) for 2012 only. RESULTS Case registries were available at 30/32 facilities for 2010 and all 32 for 2012. Totals of 3711 (2010) and 4143 (2012) cases were reported at the facilities. Case totals per site were higher in site registries than in the national databases by 361 (9.7%) (ICC 2010), 28 (0.8%) (ICC 2012), and 31 (0.8%) cases (PNLT 2012). Of abstracted individual cases, respectively 11.8% and 6.8% were not recorded in national databases for 2010 (n = 323) and 2012 (n = 351). CONCLUSIONS The evaluation demonstrated an improvement in reporting registered TB cases to the PNLT in Haiti between 2010 and 2012. Further improvement in case notification will require enhanced case detection and diagnosis. PMID:26260822

A novel approach for medical research on lymphomas

PubMed Central

Conte, Cécile; Palmaro, Aurore; Grosclaude, Pascale; Daubisse-Marliac, Laetitia; Despas, Fabien; Lapeyre-Mestre, Maryse

2018-01-01

Abstract The use of claims database to study lymphomas in real-life conditions is a crucial issue in the future. In this way, it is essential to develop validated algorithms for the identification of lymphomas in these databases. The aim of this study was to assess the validity of diagnosis codes in the French health insurance database to identify incident cases of lymphomas according to results of a regional cancer registry, as the gold standard. Between 2010 and 2013, incident lymphomas were identified in hospital data through 2 algorithms of selection. The results of the identification process and characteristics of incident lymphomas cases were compared with data from the Tarn Cancer Registry. Each algorithm's performance was assessed by estimating sensitivity, predictive positive value, specificity (SPE), and negative predictive value. During the period, the registry recorded 476 incident cases of lymphomas, of which 52 were Hodgkin lymphomas and 424 non-Hodgkin lymphomas. For corresponding area and period, algorithm 1 provides a number of incident cases close to the Registry, whereas algorithm 2 overestimated the number of incident cases by approximately 30%. Both algorithms were highly specific (SPE = 99.9%) but moderately sensitive. The comparative analysis illustrates that similar distribution and characteristics are observed in both sources. Given these findings, the use of claims database can be consider as a pertinent and powerful tool to conduct medico-economic or pharmacoepidemiological studies in lymphomas. PMID:29480830

Agile Model Driven Development of Electronic Health Record-Based Specialty Population Registries

PubMed Central

Kannan, Vaishnavi; Fish, Jason C.; Willett, DuWayne L.

2018-01-01

The transformation of the American healthcare payment system from fee-for-service to value-based care increasingly makes it valuable to develop patient registries for specialized populations, to better assess healthcare quality and costs. Recent widespread adoption of Electronic Health Records (EHRs) in the U.S. now makes possible construction of EHR-based specialty registry data collection tools and reports, previously unfeasible using manual chart abstraction. But the complexities of specialty registry EHR tools and measures, along with the variety of stakeholders involved, can result in misunderstood requirements and frequent product change requests, as users first experience the tools in their actual clinical workflows. Such requirements churn could easily stall progress in specialty registry rollout. Modeling a system’s requirements and solution design can be a powerful way to remove ambiguities, facilitate shared understanding, and help evolve a design to meet newly-discovered needs. “Agile Modeling” retains these values while avoiding excessive unused up-front modeling in favor of iterative incremental modeling. Using Agile Modeling principles and practices, in calendar year 2015 one institution developed 58 EHR-based specialty registries, with 111 new data collection tools, supporting 134 clinical process and outcome measures, and enrolling over 16,000 patients. The subset of UML and non-UML models found most consistently useful in designing, building, and iteratively evolving EHR-based specialty registries included User Stories, Domain Models, Use Case Diagrams, Decision Trees, Graphical User Interface Storyboards, Use Case text descriptions, and Solution Class Diagrams. PMID:29750222

Agile Model Driven Development of Electronic Health Record-Based Specialty Population Registries.

PubMed

Kannan, Vaishnavi; Fish, Jason C; Willett, DuWayne L

2016-02-01

The transformation of the American healthcare payment system from fee-for-service to value-based care increasingly makes it valuable to develop patient registries for specialized populations, to better assess healthcare quality and costs. Recent widespread adoption of Electronic Health Records (EHRs) in the U.S. now makes possible construction of EHR-based specialty registry data collection tools and reports, previously unfeasible using manual chart abstraction. But the complexities of specialty registry EHR tools and measures, along with the variety of stakeholders involved, can result in misunderstood requirements and frequent product change requests, as users first experience the tools in their actual clinical workflows. Such requirements churn could easily stall progress in specialty registry rollout. Modeling a system's requirements and solution design can be a powerful way to remove ambiguities, facilitate shared understanding, and help evolve a design to meet newly-discovered needs. "Agile Modeling" retains these values while avoiding excessive unused up-front modeling in favor of iterative incremental modeling. Using Agile Modeling principles and practices, in calendar year 2015 one institution developed 58 EHR-based specialty registries, with 111 new data collection tools, supporting 134 clinical process and outcome measures, and enrolling over 16,000 patients. The subset of UML and non-UML models found most consistently useful in designing, building, and iteratively evolving EHR-based specialty registries included User Stories, Domain Models, Use Case Diagrams, Decision Trees, Graphical User Interface Storyboards, Use Case text descriptions, and Solution Class Diagrams.

An Innovative Approach to Improve Completeness of Treatment and Other Key Data Elements in a Population-Based Cancer Registry: A15-Month Data Submission.

PubMed

Hsieh, Mei-Chin; Mumphrey, Brent; Pareti, Lisa; Yi, Yong; Wu, Xiao-Cheng

2017-01-01

BACKGROUND: In order to comply with the Louisiana legislative obligation and meet funding agencies’ requirement of case completeness for 12-month data submission, hospital cancer registries are mandated to submit cancer incidence data to the Louisiana Tumor Registry (LTR) within 6 months of diagnosis. However, enforcing compliance with timely reporting may result in incomplete data on adjuvant treatment received by the LTR. Although additional treatment information can be obtained via retransmission of the North American Association of Central Cancer Registries (NAACCR)–modified abstracts, consolidating multiple NAACCR-modified abstracts for the same case is extremely time consuming. To avoid a huge amount of work while obtaining timely and complete data, the LTR has requested hospital cancer registries resubmit their data 15 months after the close of the diagnosis year. The purpose of this report is to assess the improvement in the completeness of data items related to treatment, staging and site specific factors. METHODS: The LTR requested that hospital cancer registries resubmit 15-month data between April 1, 2016 and April 15, 2016 for cases diagnosed in 2014. Microsoft Visual Studio Visual Basic script was used to link and compare resubmitted data with existing data in the LTR database. Data elements used for matching same patient/tumor were name, Social Security number, date of birth, primary site, laterality, and hospital identifier number. Treatment data items were compared as known vs none/ unknown and known vs known with different code. Matched records with updated information were imported into the LTR database and flagged as modified abstract records for manual consolidation. Nonmatched records were also loaded in the LTR database as potential new cases for further investigation. RESULTS: A total of 25,207 resubmitted NAACCR abstracts were received from 38 hospitals and freestanding radiation centers. About 11.1% had at least 1 update related to treatment and/or other data item; an average of 3.3 updates per updated abstract. The majority of the updates (45.7%) for treatment were changes from none/unknown to known value and 42.6% of the updates were related to radiation treatment fields. In addition, 172 potential new cases were identified. Approximately 10.5% (18 cases) of these new cases were confirmed to be truly missed cases after investigation. CONCLUSION: The 15-month data resubmission is a cost-effective approach to obtaining complete information on treatment and other key data items from reporting facilities and can also be used to identify potential missed cases.

[Predictive value and sensibility of hospital discharge system (PMSI) compared to cancer registries for thyroïd cancer (1999-2000)].

PubMed

Carré, N; Uhry, Z; Velten, M; Trétarre, B; Schvartz, C; Molinié, F; Maarouf, N; Langlois, C; Grosclaude, P; Colonna, M

2006-09-01

Cancer registries have a complete recording of new cancer cases occurring among residents of a specific geographic area. In France, they cover only 13% of the population. For thyroid cancer, where incidence rate is highly variable according to the district conversely to mortality, national incidence estimates are not accurate. A nationwide database, such as hospital discharge system, could improve this estimate but its positive predictive value and sensibility should be evaluated. The positive predictive value and the sensitivity for thyroid cancer case ascertainment (ICD-10) of the national hospital discharge system in 1999 and 2000 were estimated using the cancer registries database of 10 French districts as gold standard. The linkage of the two databases required transmission of nominative information from the health facilities of the study. From the registries database, a logistic regression analysis was carried out to identify factors related to being missed by the hospital discharge system. Among the 973 standardized discharge charts selected from the hospital discharge system, 866 were considered as true positive cases, and 107 as false positive. Forty five of the latter group were prevalent cases. The predictive positive value was 89% (95% confidence interval (CI): 87-91%) and did not differ according to the district (p=0,80). According to the cancer registries, 322 thyroid cancer cases diagnosed in 1999 or 2000 were missed by the hospital discharge system. Thus, the sensitivity of this latter system was 73% (70-76%) and varied significantly from 62% to 85% across districts (p<0.001) and according to the type of health facility (p<0.01). Predictive positive value of the French hospital discharge system for ascertainment of thyroid cancer cases is high and stable across districts. Sensitivity is lower and varies significantly according to the type of health facility and across districts, which limits the interest of this database for a national estimate of thyroid cancer incidence rate.

Validation of prostate-specific antigen laboratory values recorded in Surveillance, Epidemiology, and End Results registries.

PubMed

Adamo, Margaret Peggy; Boten, Jessica A; Coyle, Linda M; Cronin, Kathleen A; Lam, Clara J K; Negoita, Serban; Penberthy, Lynne; Stevens, Jennifer L; Ward, Kevin C

2017-02-15

Researchers have used prostate-specific antigen (PSA) values collected by central cancer registries to evaluate tumors for potential aggressive clinical disease. An independent study collecting PSA values suggested a high error rate (18%) related to implied decimal points. To evaluate the error rate in the Surveillance, Epidemiology, and End Results (SEER) program, a comprehensive review of PSA values recorded across all SEER registries was performed. Consolidated PSA values for eligible prostate cancer cases in SEER registries were reviewed and compared with text documentation from abstracted records. Four types of classification errors were identified: implied decimal point errors, abstraction or coding implementation errors, nonsignificant errors, and changes related to "unknown" values. A total of 50,277 prostate cancer cases diagnosed in 2012 were reviewed. Approximately 94.15% of cases did not have meaningful changes (85.85% correct, 5.58% with a nonsignificant change of <1 ng/mL, and 2.80% with no clinical change). Approximately 5.70% of cases had meaningful changes (1.93% due to implied decimal point errors, 1.54% due to abstract or coding errors, and 2.23% due to errors related to unknown categories). Only 419 of the original 50,277 cases (0.83%) resulted in a change in disease stage due to a corrected PSA value. The implied decimal error rate was only 1.93% of all cases in the current validation study, with a meaningful error rate of 5.81%. The reasons for the lower error rate in SEER are likely due to ongoing and rigorous quality control and visual editing processes by the central registries. The SEER program currently is reviewing and correcting PSA values back to 2004 and will re-release these data in the public use research file. Cancer 2017;123:697-703. © 2016 American Cancer Society. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Registries in orthopaedics.

PubMed

Delaunay, C

2015-02-01

The first nationwide orthopaedic registry was created in Sweden in 1975 to collect data on total knee arthroplasty (TKA). Since then, several countries have established registries, with varying degrees of success. Managing a registry requires time and money. Factors that contribute to successful registry management include the use of a single identifier for each patient to ensure full traceability of all procedures related to a given implant; a long-term funding source; a contemporary, rapid, Internet-based data collection method; and the collection of exhaustive data, at least for innovative implants. The effects of registries on practice patterns should be evaluated. The high cost of registries raises issues of independence and content ownership. Scandinavian countries have been maintaining orthopaedic registries for nearly four decades (since 1975). The first English-language orthopaedic registry was not created until 1998 (in New Zealand), and both the US and many European countries are still struggling to establish orthopaedic registries. To date, there are 11 registered nationwide registries on total knee and total hip replacement. The data they contain are often consistent, although contradictions occur in some cases due to major variations in cultural and market factors. The future of registries will depend on the willingness of health authorities and healthcare professionals to support the creation and maintenance of these tools. Surgeons feel that registries should serve merely to compare implants. Health authorities, in contrast, have a strong interest in practice patterns and healthcare institution performances. Striking a balance between these objectives should allow advances in registry development in the near future. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

Estimating the incidence of malignant mesothelioma in Vietnam: a pilot descriptive cancer registration study

PubMed Central

Soeberg, Matthew J.; Luong, Mai Anh; Tran, Van Thuan; Tran, Anh Thanh; Nguyen, Thị Thu Huyen; Bui, Dieu; Nguyen, Thi Hoai Nga; Takahashi, Ken; van Zandwijk, Nico

2016-01-01

Introduction Global asbestos consumption has shifted toward lower income countries, particularly in the Asian region including Vietnam where asbestos and asbestos-containing products have been imported since the late 1960s. Methods This pilot descriptive epidemiological study aimed to provide contemporary estimates of malignant mesothelioma incidence (histological subtype M9050/3; ICD-O-3) by gender and age group as recorded across nine cancer registries in Vietnam. Results We identified 148 incident cases of malignant mesothelioma during 1987–2013. The majority of cases were recorded in the Hanoi region (n = 93) and were aged 55 years or older (n = 96). Discussion By carefully reviewing existing cancer registry records in Vietnam, we identified a larger number of malignant mesothelioma cases than previously estimated. We recommend the use of cancer registry data in tracking future asbestos-related disease in Vietnam. PMID:27388204

Estimating the incidence of malignant mesothelioma in Vietnam: a pilot descriptive cancer registration study.

PubMed

Soeberg, Matthew J; Luong, Mai Anh; Tran, Van Thuan; Tran, Anh Thanh; Nguyen, Thị Thu Huyen; Bui, Dieu; Nguyen, Thi Hoai Nga; Takahashi, Ken; van Zandwijk, Nico

2016-04-01

Global asbestos consumption has shifted toward lower income countries, particularly in the Asian region including Vietnam where asbestos and asbestos-containing products have been imported since the late 1960s. This pilot descriptive epidemiological study aimed to provide contemporary estimates of malignant mesothelioma incidence (histological subtype M9050/3; ICD-O-3) by gender and age group as recorded across nine cancer registries in Vietnam. We identified 148 incident cases of malignant mesothelioma during 1987-2013. The majority of cases were recorded in the Hanoi region (n = 93) and were aged 55 years or older (n = 96). By carefully reviewing existing cancer registry records in Vietnam, we identified a larger number of malignant mesothelioma cases than previously estimated. We recommend the use of cancer registry data in tracking future asbestos-related disease in Vietnam.

[Multiple sclerosis epidemiological situation update: pertinence and set-up of a population based registry of new cases in Catalonia].

PubMed

Otero, S; Batlle, J; Bonaventura, I; Brieva, Ll; Bufill, E; Cano, A; Carmona, O; Escartín, A; Marco, M; Moral, E; Munteis, E; Nos, C; Pericot, I; Perkal, H; Ramió-Torrentà, Ll; Ramo-Tello, C; Saiz, A; Sastre-Garriga, J; Tintoré, M; Vaqué, J; Montalban, X

2010-05-16

The first epidemiological studies on multiple sclerosis (MS) around the world pictured a north to south latitudinal gradient that led to the first genetic and environmental pathogenic hypothesis. MS incidence seems to be increasing during the past 20 years based on recent data from prospective studies performed in Europe, America and Asia. This phenomenon could be explained by a better case ascertainment as well as a change in causal factors. The few prospective studies in our area together with the increase in the disease in other regions, justifies an epidemiological MS project in order to describe the incidence and temporal trends of MS. A prospective multicenter MS registry has been established according to the actual requirements of an epidemiological surveillance system. Case definition is based on the fulfillment of the McDonald diagnostic criteria. The registry setting is the geographical area of Cataluna (northeastern Spain), using a wide network of hospitals specialized in MS management. Recent epidemiological studies have described an increase in MS incidence. In order to contrast this finding in our area, we consider appropriate to set up a population based registry.

Epidemiology of hypospadias in Europe: a registry-based study.

PubMed

Bergman, Jorieke E H; Loane, Maria; Vrijheid, Martine; Pierini, Anna; Nijman, Rien J M; Addor, Marie-Claude; Barisic, Ingeborg; Béres, Judit; Braz, Paula; Budd, Judith; Delaney, Virginia; Gatt, Miriam; Khoshnood, Babak; Klungsøyr, Kari; Martos, Carmen; Mullaney, Carmel; Nelen, Vera; Neville, Amanda J; O'Mahony, Mary; Queisser-Luft, Annette; Randrianaivo, Hanitra; Rissmann, Anke; Rounding, Catherine; Tucker, David; Wellesley, Diana; Zymak-Zakutnia, Natalya; Bakker, Marian K; de Walle, Hermien E K

2015-12-01

Hypospadias is a common congenital malformation. The prevalence of hypospadias has a large geographical variation, and recent studies have reported both increasing and decreasing temporal trends. It is unclear whether hypospadias prevalence is associated with maternal age. To analyze the prevalence and trends of total hypospadias, isolated hypospadias, hypospadias with multiple congenital anomalies, hypospadias with a known cause, and hypospadias severity subtypes in Europe over a 10-year period and to investigate whether maternal age is associated with hypospadias. We included all children with hypospadias born from 2001 to 2010 who were registered in 23 EUROCAT registries. Information on the total number of births and maternal age distribution for the registry population was also provided. We analyzed the total prevalence of hypospadias and relative risks by maternal age. From 2001 to 2010, 10,929 hypospadias cases were registered in 5,871,855 births, yielding a total prevalence of 18.61 per 10,000 births. Prevalence varied considerably between different registries, probably due to differences in ascertainment of hypospadias cases. No significant temporal trends were observed with the exceptions of an increasing trend for anterior and posterior hypospadias and a decreasing trend for unspecified hypospadias. After adjusting for registry effects, maternal age was not significantly associated with hypospadias. Total hypospadias prevalence was stable in 23 EUROCAT registries from 2001 to 2010 and was not significantly influenced by maternal age.

[The possibility of registering in the Spanish Civil Registry children born abroad from surrogate mothers].

PubMed

De Barrón Arniches, Paloma

2009-01-01

In the Spanish Civil Registry it is now possible to register "natural" children of a homosexual marriage born overseas through surrogate pregnancy. And this is despite article 10.1 of the current Spanish law regarding assisted human reproduction techniques, which declares fully null and void contracts renouncing maternal relationship, and orders imperatively that in these cases, the relationship of children is determined by birth. This article analyses and formulates a criticism regarding the Resolution of the Office of Registries and Notaries, of February 18, 2009, insisting on some relevant issues such as legal security and greater interest of the minor, in the context of the analysis of the facts of the case and the arguments put forward in the resolution.

Chronic myelogenous leukemia in eastern Pennsylvania: an assessment of registry reporting.

PubMed

Mertz, Kristen J; Buchanich, Jeanine M; Washington, Terri L; Irvin-Barnwell, Elizabeth A; Woytowitz, Donald V; Smith, Roy E

2015-01-01

Chronic myelogenous leukemia (CML) has been reportable to the Pennsylvania Cancer Registry (PCR) since the 1980s, but the completeness of reporting is unknown. This study assessed CML reporting in eastern Pennsylvania where a cluster of another myeloproliferative neoplasm was previously identified. Cases were identified from 2 sources: 1) PCR case reports for residents of Carbon, Luzerne, or Schuylkill County with International Classification of Diseases for Oncology, Third Edition (ICD-O-3) codes 9875 (CML, BCR-ABL+), 9863 (CML, NOS), and 9860 (myeloid leukemia) and date of diagnosis 2001-2009, and 2) review of billing records at hematology practices. Participants were interviewed and their medical records were reviewed by board-certified hematologists. PCR reports included 99 cases coded 9875 or 9863 and 9 cases coded 9860; 2 additional cases were identified by review of billing records. Of the 110 identified cases, 93 were mailed consent forms, 23 consented, and 12 medical records were reviewed. Hematologists confirmed 11 of 12 reviewed cases as CML cases; all 11 confirmed cases were BCR/ABL positive, but only 1 was coded as positive (code 9875). Very few unreported CML cases were identified, suggesting relatively complete reporting to the PCR. Cases reviewed were accurately diagnosed, but ICD-0-3 coding often did not reflect BCR-ABL-positive tests. Cancer registry abstracters should look for these test results and code accordingly.

78 FR 22886 - Agency Forms Undergoing Paperwork Reduction Act Review

Federal Register 2010, 2011, 2012, 2013, 2014

2013-04-17

... mechanisms for enhanced description of cases of breast cancer, colorectal cancer, and chronic myelogenous... National Program of Cancer Registries Cancer Surveillance System-- (0920-0469 Reinstatement Exp. 11/30/2012... and Prevention (CDC). Background and Brief Description In 1992, Congress passed the Cancer Registries...

Going the distance for certified cancer registrars.

PubMed

Backus, Amanda; Kolender, Ellen R

2009-01-01

Cancer registry departments are using electronic technology to solve the local and national Certified Tumor Registrar (CTR) shortages. As demand for CTRs continues to increase without an accompanied increase in the supply of qualified personnel, cancer registry departments are looking for new solutions to this growing local and national trend. In order to solve this problem, some cancer registries have started using telecommunication to fill the empty positions within their departments. This is the case at Roper St. Francis Healthcare (RSFH) in Charleston, SC, where Cancer Registry Manager, Ellen Kolender, RHIA, CTR, used telecommuting to fill one full-time and one part-time CTR position.

Epidemiology of atlas fractures--a national registry-based cohort study of 1,537 cases.

PubMed

Matthiessen, Christian; Robinson, Yohan

2015-11-01

The epidemiology of fractures of the first cervical vertebra-the atlas-has not been well documented. Previous studies concerning atlas fractures focus on treatment and form a weak platform for epidemiologic study. This study aims to provide reliable epidemiologic data on atlas fractures. This was a national registry-based cohort study. A total of 1,537 cases of atlas fractures between 1997 and 2011 from the Swedish National Patient Registry (NPR). The outcome measures were annual incidence and mortality. Data from the NPR and the Swedish Cause of Death Registry were extracted, including age, gender, diagnosis, comorbidity, treatment codes, and date of death. The Charlson Comorbidity Index was calculated and a survival analysis performed. A total of 869 (56.5%) cases were men, and 668 (43.5%) were women. The mean age of the entire population was 64 years. The proportion of atlas fractures of all registered cervical fractures was 10.6%. In 19% of all cases, there was an additional fracture of the axis, and 7% of all cases had additional subaxial cervical fractures. Patients with fractures of the axis were older than patients with isolated atlas fractures. The annual incidence almost doubled during the study period, and in 2011, it was 17 per million inhabitants. The greatest increase in incidence occurred in the elderly population. Atlas fractures occurred predominantly in the elderly population. Further study is needed to determine the cause of the increasing incidence. Copyright © 2015 The Authors. Published by Elsevier Inc. All rights reserved.

The history and use of cancer registry data by public health cancer control programs in the United States.

PubMed

White, Mary C; Babcock, Frances; Hayes, Nikki S; Mariotto, Angela B; Wong, Faye L; Kohler, Betsy A; Weir, Hannah K

2017-12-15

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. Cancer 2017;123:4969-76. Published 2017. This article is a U.S. Government work and is in the public domain in the USA. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

Improving Information on Maternal Medication Use by Linking Prescription Data to Congenital Anomaly Registers: A EUROmediCAT Study.

PubMed

de Jonge, Linda; Garne, Ester; Gini, Rosa; Jordan, Susan E; Klungsoyr, Kari; Loane, Maria; Neville, Amanda J; Pierini, Anna; Puccini, Aurora; Thayer, Daniel S; Tucker, David; Vinkel Hansen, Anne; Bakker, Marian K

2015-11-01

Research on associations between medication use during pregnancy and congenital anomalies is significative for assessing the safe use of a medicine in pregnancy. Congenital anomaly (CA) registries do not have optimal information on medicine exposure, in contrast to prescription databases. Linkage of prescription databases to the CA registries is a potentially effective method of obtaining accurate information on medicine use in pregnancies and the risk of congenital anomalies. We linked data from primary care and prescription databases to five European Surveillance of Congenital Anomalies (EUROCAT) CA registries. The linkage was evaluated by looking at linkage rate, characteristics of linked and non-linked cases, first trimester exposure rates for six groups of medicines according to the prescription data and information on medication use registered in the CA databases, and agreement of exposure. Of the 52,619 cases registered in the CA databases, 26,552 could be linked. The linkage rate varied between registries over time and by type of birth. The first trimester exposure rates and the agreements between the databases varied for the different medicine groups. Information on anti-epileptic drugs and insulins and analogue medicine use recorded by CA registries was of good quality. For selective serotonin reuptake inhibitors, anti-asthmatics, antibacterials for systemic use, and gonadotropins and other ovulation stimulants, the recorded information was less complete. Linkage of primary care or prescription databases to CA registries improved the quality of information on maternal use of medicines in pregnancy, especially for medicine groups that are less fully registered in CA registries.

[Huntington's Disease in Balearic Islands Population-Based Registry of Rare Diseases: Prevalence and Mortality during the Period 2010-2013. Spain].

PubMed

Cáffaro Rovira, Mercedes; Salom Castell, M Magdalena

2017-02-16

Huntington's disease is a hereditary disease with low prevalence. The low frequency of Huntington's disease leads to its inclusion as one of the pathologies in the Registry of Rare Diseases. The Balearic Islands Population-based Registry of Rare Diseases began in 2010. Previously, there had been no prevalence or mortality data for Huntington's disease in the Balearic Islands. The aim of this study was to determine the prevalence and mortality of Huntington's disease in the Balearic Islands between 2010 and 2013. The data sources were the Balearic Islands Population-based Registry of Rare Diseases, from which the diagnosed cases were obtained; the Balearic Islands Mortality Register, from which the deceased cases were obtained; the Balearic Islands Health Service, from which the number of Health Cards was obtained; and the National Institute for Statistics, from which population data were obtained. Prevalence and mortality rates were calculated. The Balearic Islands Population-based Registry of Rare Diseases registered 27 cases of Huntington's disease between 2010-2013. 63% of these were women. The period prevalence rate was 2.6 per 100,000 and the period mortality rate was 1.1 per 100,000. Menorca was the island with the highest rates, the prevalence rate was 5,9 per 100,000 and the mortality rate was 2,1 per 100,000. Prevalence and mortality of Huntington's disease in the Balearic Islands are low compared to similar areas.

Maternal mortality in Denmark, 1985-1994.

PubMed

Andersen, Betina Ristorp; Westergaard, Hanne Brix; Bødker, Birgit; Weber, Tom; Møller, Margrete; Sørensen, Jette Led

2009-02-01

In Denmark, maternal mortality has been reported over the last century, both locally through hospital reports and in national registries. The purpose of this study was to analyze data from national medical registries of pregnancy-related deaths in Denmark 1985-1994 and to classify them according to the UK Confidential Enquiry into Maternal Deaths (CEMD). All deaths of women with a registered pregnancy within 12 months prior to the death were identified by comparing the Danish medical registries, death certificates, and relevant codes according to International Classification of Diseases (ICD-10). All cases were classified using the UK CEMD classification. Cases of maternal death were further evaluated by an audit group. 311 cases were classified. 92 deaths (29.6%) occurred 42 days), 1 woman died from a direct obstetric cause, 46 from indirect causes, and 172 from fortuitous causes. Hypertensive disorders of pregnancy were the major cause of direct maternal deaths. The rate of maternal deaths constituted 9.8/100,000 maternities (i.e. the number of women delivering registrable live births at any gestation or stillbirths at 24 weeks of gestation or later). This is the first systematic report on deaths in Denmark based on data from national registries. The maternal mortality rate in Denmark is comparable to the rates in other developed countries. Fortunately, statistics are low, but each case represents potential learning. Obstetric care has changed and classification methods differ between countries. Prospective registration and registry linkage seem to be a way to ensure completion. This retrospective study has provided the background for a prospective study on registration and evaluation of maternal mortality in Denmark.

Completeness of T, N, M and stage grouping for all cancers in the Mallorca Cancer Registry.

PubMed

Ramos, M; Franch, P; Zaforteza, M; Artero, J; Durán, M

2015-11-04

TNM staging of cancer is used to establish the treatment and prognosis for cancer patients, and also allows the assessment of screening programmes and hospital performance. Collection of staging data is becoming a cornerstone for cancer registries. The objective of the study was to assess the completeness of T, N, M and stage grouping registration for all cancers in the Mallorca Cancer Registry in 2006-2008 and to explore differences in T, N, M and stage grouping completeness by site, gender, age and type of hospital. All invasive cancer cases during the period 2006-2008 were selected. DCO, as well as children's cancers, CNS, unknown primary tumours and some haematological cases were excluded. T, N, M and stage grouping were collected separately and followed UICC (International Union Against Cancer) 7th edition guidelines. For T and N, we registered whether they were pathological or clinical. Ten thousand two hundred fifty-seven cases were registered. After exclusions, the study was performed with 9283 cases; 39.4 % of whom were women and 60.6 % were men. T was obtained in 48.6 % cases, N in 36.5 %, M in 40 % and stage in 37.9 %. T and N were pathological in 71 % of cases. Stage completeness exceeded 50 % in lung, colon, ovary and oesophagus, although T also exceeded 50 % at other sites, including rectum, larynx, colon, breast, bladder and melanoma. No differences were found in TNM or stage completeness by gender. Completeness was lower in younger and older patients, and in cases diagnosed in private clinics. T, N, M and stage grouping data collection in population-based cancer registries is feasible and desirable.

The Virginia Henderson International Nursing Library: resource for nurse administrators.

PubMed

Graves, J R

1997-01-01

This article describes the major knowledge resource of the Virginia Henderson International Nursing Library, The Registry of Nursing. The first part of this article examines informatics issues and is accompanied by examples of retrieval from a typical bibliographic database and a retrieval from the Registry of Nursing Research using case mix, both as a subject heading and as a research variable. The second part of the article examines the interaction of informatics and technology used in the Registry and presents some other Library resources.

[Use of hospital discharge records to estimate the incidence of malignant mesotheliomas].

PubMed

Stura, Antonella; Gangemi, Manuela; Mirabelli, Dario

2007-01-01

cancer registries usually adopt strategies for active case finding. Interest in using administrative sources of data is rising to assess the usefullness of Hospital discharge records (HDR) to supplement the traditional methods of case finding of the malignant mesothelioma (MM) Registry of the Piedmont Region. HDRs have been used since 1996. We assessed the number of cases identified only through HDRs and their influence on MM incidence. cases identified through HDRs were about 10% of those with histologic confirmation of the diagnosis, 34% of those with cytologic confirmation, and 72% of those without morphologic examination. Cases diagnosed in hospitals located outside the region would have been easily (50%) missed. The age-standardised (standard: Italian pop. at the 1981 census) incidence rate of pleural MM increases from 2.2 to 2.7 per 100,000 per year among men, and from 1.1 to 1.2 among women, when including all cases identified from HDRs, irrespective of their diagnostic confirmation. Peritoneal MM incidence estimates are unaffected. Overall without access to the hospital discharge files, 179 cases out of 954 would not have been registered between 1996 and 2001. In the same calendar period 59 cases identified by means of active search by the Registry have not been found in the hospital discharge files. HDRs are useful in addition, but not in substitution, to active search of MM cases.

REAC/TS Radiation Accident Registry: An Overview

DOE Office of Scientific and Technical Information (OSTI.GOV)

Doran M. Christensen, DO, REAC /TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

2012-12-12

Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater sharemore » of deaths has occurred in medical settings.« less

The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017.

PubMed

Shillitoe, B; Bangs, C; Guzman, D; Gennery, A R; Longhurst, H J; Slatter, M; Edgar, D M; Thomas, M; Worth, A; Huissoon, A; Arkwright, P D; Jolles, S; Bourne, H; Alachkar, H; Savic, S; Kumararatne, D S; Patel, S; Baxendale, H; Noorani, S; Yong, P F K; Waruiru, C; Pavaladurai, V; Kelleher, P; Herriot, R; Bernatonienne, J; Bhole, M; Steele, C; Hayman, G; Richter, A; Gompels, M; Chopra, C; Garcez, T; Buckland, M

2018-06-01

This is the second report of the United Kingdom Primary Immunodeficiency (UKPID) registry. The registry will be a decade old in 2018 and, as of August 2017, had recruited 4758 patients encompassing 97% of immunology centres within the United Kingdom. This represents a doubling of recruitment into the registry since we reported on 2229 patients included in our first report of 2013. Minimum PID prevalence in the United Kingdom is currently 5·90/100 000 and an average incidence of PID between 1980 and 2000 of 7·6 cases per 100 000 UK live births. Data are presented on the frequency of diseases recorded, disease prevalence, diagnostic delay and treatment modality, including haematopoietic stem cell transplantation (HSCT) and gene therapy. The registry provides valuable information to clinicians, researchers, service commissioners and industry alike on PID within the United Kingdom, which may not otherwise be available without the existence of a well-established registry. © 2018 British Society for Immunology.

Feasibility of evaluating quality cancer care using registry data and electronic health records: a population-based study.

PubMed

Caldarella, Adele; Amunni, Gianni; Angiolini, Catia; Crocetti, Emanuele; Di Costanzo, Francesco; Di Leo, Angelo; Giusti, Francesco; Pegna, Andrea Lopes; Mantellini, Paola; Luzzatto, Lucio; Paci, Eugenio

2012-08-01

To evaluate the quality of patients care, a set of indicators of the standards of cancer care were defined. We developed a set of indicators to assess the implementation in daily practice of recommendation produced by a regional network (Istituto Toscano Tumori). This set was tested in a retrospective study in the resident population of the Tuscany Region; the regional health system is organized on 12 local health authorities which refer to three macro areas (Area Vasta). The study included incident colorectal, lung and breast cancer cases listed in 2004 for the Tuscan Cancer Registry, a population-based registry which collected tumor cases diagnosed in all residents in Tuscany. Electronic data from registry database were used to determine the compliance with each indicator for patients in 2004. To validate the results, an ad hoc clinical survey including the same geographical area for the year 2006 was performed. None. The proportion of patients who fulfilled each of the indicators. Our study showed the feasibility of the evaluation of the quality of cancer care using cancer registry population-based data and major computerized information systems. The estimation of the selected indicators confirmed a good homogeneity among areas, and globally revealed a good intraregional performance. Further work is needed to develop specific quality measures, particularly about structural data and to continually revise indicators of quality of care. Data from a cancer registry, however, can be useful to evaluate quality of cancer care.

Feasibility of creating a National ALS Registry using administrative data in the United States

PubMed Central

KAYE, WENDY E.; SANCHEZ, MARCHELLE; WU, JENNIFER

2015-01-01

Uncertainty about the incidence and prevalence of amyotrophic lateral sclerosis (ALS), as well as the role of the environment in the etiology of ALS, supports the need for a surveillance system/registry for this disease. Our aim was to evaluate the feasibility of using existing administrative data to identify cases of ALS. The Agency for Toxic Substances and Disease Registry (ATSDR) funded four pilot projects at tertiary care facilities for ALS, HMOs, and state based organizations. Data from Medicare, Medicaid, the Veterans Health Administration, and Veterans Benefits Administration were matched to data available from site-specific administrative and clinical databases for a five-year time-period (1 January 2001–31 December 2005). Review of information in the medical records by a neurologist was considered the gold standard for determining an ALS case. We developed an algorithm using variables from the administrative data that identified true cases of ALS (verified by a neurologist). Individuals could be categorized into ALS, possible ALS, and not ALS. The best algorithm had sensitivity of 87% and specificity of 85%. We concluded that administrative data can be used to develop a surveillance system/ registry for ALS. These methods can be explored for creating surveillance systems for other neurodegenerative diseases. PMID:24597459

The design of Radiation Accident Registry.

PubMed

Chen, Jing; Seely, Bob; Bergman, Lauren; Moir, Deborah

2011-03-01

In order to provide effective monitoring and follow-up on the health effects of individuals accidentally exposed to ionising radiation, a Radiation Accident Registry (RAR) has been designed and constructed as an extension to the existing National Dose Registry (NDR). The RAR has basic functions of recording, monitoring and reporting. This type of registry is able to assist responders in preparing for and managing situations during radiological events and in providing effective follow-up on the long-term health effects of persons exposed to ionising radiation. It is especially important to register radiation-exposed people in vulnerable population groups, such as children and pregnant women, to ensure proper long-term health care and protection. Even though radiation accidents are rare, a registry prepared for such accidents could involve a large population and, in some cases, require lifetime monitoring for individuals. One of the most challenging tasks associated with RAR is the assessment of radiation dose resulting from accidents. In some cases, the assessment of radiation doses to individuals could be a process requiring the involvement of various methods. The development of fast and accurate dose assessment tools will remain a long-term challenge associated with the RAR. To meet this challenge, further research activities in radiation dosimetry for individual monitoring are needed.

Gender and geographic differences in the prevalence of autism spectrum disorders in children: analysis of data from the national disability registry of Taiwan.

PubMed

Lai, Der-Chung; Tseng, Yen-Cheng; Hou, Yuh-Ming; Guo, How-Ran

2012-01-01

The prevalence of autism spectrum disorders (ASD) in the world has increased dramatically in the recent decades. However, data at the national level are limited, and geographic differences are seldom evaluated. According to the law, the local governments in Taiwan began to certify disabled residents and provide various services in 1980, and the central government maintains a registry of certified cases. The registry started to enroll cases of ASD in 1990, providing a unique opportunity for studying ASD at the national level. Because the government discourages the certification under 3 years of age, we limited our analyses to those who were at least 3 years old. Using the registry data from 2004 to 2010, we calculated the prevalence of ASD by age, gender, and geographic area and assessed the changes over time. From 2004 to 2010, the registered cases between 3 and 17 years old increased from 3995 to 8072 annually, and the prevalence generally increased every year in all age groups (p<0.01). In each year there were more boy cases than girl cases, and the prevalence rate ratio ranged from 5.64:1 to 6.06:1 (p<0.01 in all years), with an increasing trend over time (p<0.01). A higher prevalence was observed in the urban areas over the years, and the prevalence rate ratio ranged from 2.24:1 to 2.72:1 (p<0.01 in all years), with a decreasing trend over time (p<0.01). Copyright © 2011 Elsevier Ltd. All rights reserved.

Population-based incidence and patterns of cancer in Kamrup Urban Cancer Registry, India.

PubMed

Sharma, Jagannath D; Kataki, Amal C; Vijay, C R

2013-01-01

Cancer is not a notifiable disease in India. The Indian Council of Medical Research (ICMR) initiated the National Cancer Registry Programme in 1982 to measure the burden and pattern of cancer in India. However, no data were available from the northeastern region till 2001 when a WHO- sponsored, ICMR project showed a relatively high frequency of microscopically diagnosed cases of cancer in the region. A population-based cancer registry was established in January 2003 in Guwahati to cover the Kamrup Urban district in the northeastern region of India. We report the data generated in the first 6 years of the registry (2003-08). Information on cancer was obtained by voluntary participation of different sources including major hospitals, diagnostic centres, state referral board and birth and death registry centres within the registry area. A total of 6608 cases were registered during the 6-year period (1 January 2003- 31 December 2008); 3927 were men and 2681 women. The age-adjusted incidence rates were 167.9 per 100000 among men and 133.8 per 100000 among women. The oesophagus was the leading site of cancer among men, comprising 18.3% of all cancers with an age-adjusted rate of 30.7 per 100000. Among women, the breast followed by the cervix uteri were the leading sites of cancer. These two cancers comprised 30% of all cancers among women. Tobacco-related cancers accounted for 58.2% of cancers among men and 26.9% of cancers among women. The patterns observed from the analysis of data from the cancer registry at Guwahati provide comprehensive information on occurrence of cancer and can be valuable for planning cancer control programmes in the region. Copyright 2013, NMJI.

Classification System for the Sudden Unexpected Infant Death Case Registry and its Application

PubMed Central

Shapiro-Mendoza, Carrie K.; Camperlengo, Lena; Ludvigsen, Rebecca; Cottengim, Carri; Anderson, Robert N.; Andrew, Thomas; Covington, Theresa; Hauck, Fern R.; Kemp, James; MacDorman, Marian

2015-01-01

Sudden unexpected infant deaths (SUID) accounted for 1 in 3 postneonatal deaths in 2010. Sudden infant death syndrome and accidental sleep-related suffocation are among the most frequently reported types of SUID. The causes of these SUID usually are not obvious before a medico-legal investigation and may remain unexplained even after investigation. Lack of consistent investigation practices and an autopsy marker make it difficult to distinguish sudden infant death syndrome from other SUID. Standardized categories might assist in differentiating SUID subtypes and allow for more accurate monitoring of the magnitude of SUID, as well as an enhanced ability to characterize the highest risk groups. To capture information about the extent to which cases are thoroughly investigated and how factors like unsafe sleep may contribute to deaths, CDC created a multistate SUID Case Registry in 2009. As part of the registry, the Centers for Disease Control and Prevention developed a classification system that recognizes the uncertainty about how suffocation or asphyxiation may contribute to death and that accounts for unknown and incomplete information about the death scene and autopsy. This report describes the classification system, including its definitions and decision-making algorithm, and applies the system to 436 US SUID cases that occurred in 2011 and were reported to the registry. These categories, although not replacing official cause-of-death determinations, allow local and state programs to track SUID subtypes, creating a valuable tool to identify gaps in investigation and inform SUID reduction strategies. PMID:24913798

Creating an effective clinical registry for rare diseases

PubMed Central

D’Agnolo, Hedwig MA; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner

2015-01-01

The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298

The impact of a model-based clinical regional registry for attention-deficit hyperactivity disorder.

PubMed

Zanetti, Michele; Cartabia, Massimo; Didoni, Anna; Fortinguerra, Filomena; Reale, Laura; Mondini, Matteo; Bonati, Maurizio

2017-09-01

This article describes the development and clinical impact of the Italian Regional ADHD Registry, aimed at collecting and monitoring diagnostic and therapeutic pathways of care for attention-deficit hyperactivity disorder children and adolescents, launched by the Italian Lombardy Region in June 2011. In particular, the model-based software used to run the registry and manage clinical care data acquisition and monitoring, is described. This software was developed using the PROSAFE programme, which is already used for data collection in many Italian intensive care units, as a stand-alone interface case report form. The use of the attention-deficit hyperactivity disorder regional registry led to an increase in the appropriateness of the clinical management of all patients included in the registry, proving to be an important instrument in ensuring an appropriate healthcare strategy for children and adolescents with attention-deficit/hyperactivity disorder.

Monitoring the impact of human papillomavirus vaccines on high-grade pre-invasive cervical lesions: designing a framework of linked immunization information system and cancer registry data in Michigan.

PubMed

Potter, Rachel C; Flagg, Elaine W; Datta, S Deblina; Saraiya, Mona; Copeland, Glenn

2015-03-10

State immunization and cancer registries contain data that, if linked, could be used to monitor the impact of human papillomavirus (HPV) vaccine on cervical cancer and precancer. Michigan is uniquely positioned to examine these outcomes using two population-based resources: the state-wide cancer registry and immunization information system (IIS). We assessed the feasibility of identifying females in the IIS who had continuous Michigan residence and linking them to the cancer registry. We considered continuous residence necessary for future studies of vaccine impact to avoid misclassifying those who may have been immunized while residing out-of-state and whose immunization therefore may not have been reported in Michigan. We identified females with 1976-1996 birthdates in the IIS and used probabilistic linkage software to match them with Michigan birth records. A stratified random sample of IIS-birth matches was provided to a commercial locator service to identify females with continuous Michigan residence. Cervical carcinoma in situ cases diagnosed in 2006 among females aged 10 through 30 years were also matched with the birth records; cancer registry-birth matches were merged with the IIS-birth matches using the birth record identifier. Overall, 68% of the 1274,282 IIS and 61% of the 1358 cancer registry records could be matched with birth records. Among the sample of IIS-birth matches, most (86%) were continuous residents. Seventy percent or more of cancer registry-birth matches merged with IIS-birth matches for cases born after 1984. This is the first effort in the U.S. to show that linking records across IIS and cancer registries is practical and reasonably efficient. The increasing proportion of matches between the registries and live birth file with birth year, and the use of population-based data, strengthen the utility of this approach. Future steps include use of this method to examine incidence of cervical cancer precursors in HPV immunization-eligible females. Copyright © 2015. Published by Elsevier Ltd.

Unrelated haematopoietic stem cell transplantation in Taiwan and beyond.

PubMed

Yang, K L; Chang, C Y; Lin, S; Shyr, M H; Lin, P Y

2009-06-01

Since its inception in October 1993, the world-renowned Buddhist Tzu Chi Marrow Donor Registry has facilitated more than 1800 cases of stem cell donations for patients in 27 countries to date. Under the auspices of the Buddhist Tzu Chi Stem Cells Center (BTCSCC), the Registry (> 310,000 donors) offers, on average, one case of stem cell donation every day to national or international transplantation community. The accomplishment of the Registry stems from the philosophy and spirit of giving without reward that was inspired by its founder Dharma Master Cheng Yen, the Samaritan devotions of selfless voluntary stem cell donors and the efforts from a dedicated network of volunteer workers. Demographically speaking, slightly less than one third of the donations are provided to domestic patients and the rest to mainland China and countries in Asia, North America, Europe, Middle East, Oceania, and South Africa. While most of the patients belong to the Oriental ethnic group, a few of the patients are non-Oriental. In addition to the Registry, a non-profit umbilical cord blood (UCB) bank is operating since 2002 to provide a complimentary role for patients unable to identify appropriate bone marrow stem cell donors in the Registry in time. To date, with an inventory of over 12,000 units of UCB cryopreserved in the Tzu Chi Cord Blood Bank, 47 units have been employed in 37 cases of transplantation for both paediatric and adult patients domestically and internationally. The fact that Buddhist Tzu Chi Marrow Donor Registry and Cord Blood Bank are established and operating without governmental financial support is unique and special. To facilitate haematopoietic stem cells to its domestic patients experiencing financial burdens, the BTCSCC offers financial aids to the underprivileged for their medical relief. This humanitarian approach and compassion is definitely a role model for many countries in the world.

Diagnosis of Dementia in the Specialist Setting: A Comparison Between the Swedish Dementia Registry (SveDem) and the Registry of Dementias of Girona (ReDeGi)

PubMed Central

Garre-Olmo, Josep; Garcia-Ptacek, Sara; Calvó-Perxas, Laia; Turró-Garriga, Oriol; López-Pousa, Secundino; Eriksdotter, Maria

2016-01-01

The aim of this study was to compare the frequency of dementia diagnoses from two dementia registries in Europe. Patients registered between 2007 and 2013 in the Swedish Dementia Registry (SveDem; Sweden) and in the Registry of Dementias of Girona (ReDeGi; North-East of Spain) were selected. We compared sociodemographic data, Mini-Mental State Examination (MMSE) scores, dementia subtype, and medication consumption of 22,384 cases from SveDem and 5,032 cases from ReDeGi. The average age (78.1 years SveDem versus 79.7 years ReDeGi) and the gender (female 58.2% SveDem versus 61.5% ReDeGi) did not greatly differ. MMSE score at diagnosis was higher for SveDem cases (22.1 versus 17.8). Alzheimer’s disease (AD) accounted for the main dementia subtype (36.6% SveDem versus 55.6% ReDeGi). The proportion of vascular dementia (VaD) and mixed dementia was higher in SveDem (18.8% versus 6.4% and 24.9 versus 13.4%), with an odds ratio (OR) and 95% confidence interval (CI) for SveDem relative to the ReDeGi of 3.41 (3.03–3.84) for VaD, and 2.15 (1.97–2.35) for mixed dementia. This was at the expense of a lower frequency of AD in SveDem (OR 0.41; 95% CI 0.39–0.44). Other dementia diagnoses such as frontotemporal dementia or dementia with Lewy bodies did not significantly differ between registries (2.3% versus 2.9%; 1.9 versus 3.1%). Large differences in medication consumption at the time of dementia diagnosis were detected (4.7 treatments SveDem versus 6.8 ReDeGi). Northern and southern European dementia cohorts differ in demographic characteristics, MMSE score at diagnosis, and drug treatment profile. PMID:27392854

Next-generation registries: fusion of data for care, and research.

PubMed

Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D

2013-01-01

Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

The New Zealand Major Trauma Registry: the foundation for a data-driven approach in a contemporary trauma system.

PubMed

Isles, Siobhan; Christey, Grant; Civil, Ian; Hicks, Peter

2017-10-06

To describe the development of the New Zealand Major Trauma Registry (NZ-MTR) and the initial experiences of its use. The background to the development of the NZ-MTR was reviewed and the processes undertaken to implement a single-instance of a web-based national registry described. A national minimum dataset was defined and utilised. Key structures to support the Registry such as a data governance group were established. The NZ-MTR was successfully implemented and is the foundation for a new, data-driven model of quality improvement. In its first year of operation over 1,300 patients were entered into the Registry although coverage is not yet universal. Overall incidence is 40.8 major trauma cases/100,000 population. The incidence in the Māori population was 69/100,000 compared with 31/100,000 in the non-Māori population. Case fatality rate was 9%. Three age peaks were observed at 20-24 years, 50-59 years and above 85 years. Road traffic crashes accounted for 50% of all caseload. A significant proportion of major trauma patients (21%) were transferred to one or more hospitals before reaching a definitive care facility. Despite the challenges working across multiple jurisdictions, initiation of a single-instance web-based registry has been achieved. The NZ-MTR enables New Zealand to have a national view of trauma treatment and outcomes for the first time. It will inform quality improvement and injury prevention initiatives and potentially decrease the burden of injury on all New Zealanders.

Acute adverse events associated with the administration of Crotalidae polyvalent immune Fab antivenom within the North American Snakebite Registry.

PubMed

Kleinschmidt, Kurt; Ruha, Anne-Michelle; Campleman, Sharan; Brent, Jeffrey; Wax, Paul

2018-04-24

Crotalidae Polyvalent Immune Fab (Fab Antivenom) is the primary Viperid antivenom used in the United States since 2000. Adverse event data associated with its use are limited. The purpose of this study is to describe the prevalence of acute adverse events associated with the use of Fab antivenom. The American College of Medical Toxicology's Toxicology Investigators Consortium maintains a prospective case registry of poisoned and envenomated patients managed by medical toxicologists at the bedside. This registry includes the North American Snakebite sub-registry. We performed a review of 438 cases entered into the Snakebite sub-registry. A total of 373 (85.2%) received at least one vial of Fab Antivenom. Forty percent were children. Adverse events occurred in 10 patients (2.7%) of whom six were adults. Rash was the most common adverse event. More severe adverse events (hypotension, bronchospasm, and/or angioedema) occurred in four (1.1%) patients. Prophylaxis was administered prior to Fab antivenom in 4.0%. Eight patients received various treatments for their adverse events. Neither the initial number of Fab antivenom vials, atopic history, nor prior envenomation correlated with the prevalence of adverse events. This prevalence of adverse events was lower than in previous studies and in a meta-analysis of 11 studies. The types of adverse events and treatments used are consistent with those in previous reports. There were no prior reports of prophylaxis use with which to compare. The prevalence of Fab antivenom adverse events in the North American Snakebite Registry was 2.7%.

[Computerization and the importance of information in health system, as in health care resources registry].

PubMed

Troselj, Mario; Fanton, Davor

2005-01-01

The possibilities of creating a health care resources registry and its operating in Croatia as well as the importance of information in health system are described. At the Croatian Institute of Public Health, monitoring of human resources is performed through the national Health Workers Registry. It also covers basic data on all health units, bed capacities of health facilities included. The initiated health care computerization has urged the idea of forming one more database on physical resources, i.e. on registered medical devices and equipment, more complete. Linking these databases on health resources would produce a single Health Care Resources Registry. The concept views Health Care Resources Registry as part of the overall health information system with centralized information on the health system. The planned development of segments of a single health information system is based on the implementation of the accepted international standards and common network services. Network services that are based on verified Internet technologies are used within a safe, reliable and closed health computer network, which makes up the health intranet (WAN--Wide Area Network). The resource registry is a software solution based on the relational database that monitors history, thus permitting the data collected over a longer period to be analyzed. Such a solution assumes the existence of a directory service, which would replace the current independent software for the Health Workers Registry. In the Health Care Resources Registry, the basic data set encompasses data objects and attributes from the directory service. The directory service is compatible with the LDAP protocol (Lightweight Directory Access Protocol), providing services uniformly to the current records on human and physical resources. Through the storage of attributes defined according to the HL7 (Health Level Seven) standard, directory service is accessible to all applications of the health information system. Directory service does not follow the history of attribute changes, and is optimized for a large number of authorizing inquiries. With it, one follows the following objects and attributes: persons, groups of people (patients, physicians, other personnel), roles (right of access and administrator permissions), organizational units, unit locations, devices and services (according to the list of services and procedures). One can add to the Health Care Resource Registry such attributes as are nonessential for inclusion in the directory service, but are of public health value. Authentication, authorization and digital signature are done by means of Smart Cards, which are used as protective elements against access to system functions, and simultaneously as a physical medium for the storage of the official certificate with which documents are signed digitally. As FINA (state financial control agency) has completed a system for certificate issuance and verification, the option of official digital signature is also available as a computer network service. Any changes taking place in the directory service are transferred by XML messages to a separate part of the Registry that reads them and automatically modifies records in the relational database. Because data input and data changes are made in health units, this makes the data updated and directly connected with health working operations. This avoids all one-time data collection campaigns using form filling about the devices and equipment in the future. As it is very difficult to monitor from a central standpoint how accurate and update the information is, it is necessary to delegate the permissions and duties associated with making changes to the directory service. By this organizational setup, the time needed to ensure data quality control is reduced. In the case described, the Health Care Resource Registry becomes an indicator of change, acquiring certain characteristics of an analytical system. An analysis of topical data renders possible proactive action and makes more effective the planning and utilization of available resources. Providing answers on the current data quickly could also be important to solution-seeking in emergencies. The present proposal to establish the Registry is intended to facilitate the future process of planning and striking a balance between investments in human and physical resources. For health expenditure control, having reliable information related to the use and purchase of new medical technology is particularly important. World Health Organization and European Union have also emphasized the need to develop new indicators in this area.

Epidemiology of the Viral Hepatitis-HIV Syndemic in San Francisco: A Collaborative Surveillance Approach

PubMed Central

Scheer, Susan; Shallow, Sue; Pipkin, Sharon; Huang, Sandra

2014-01-01

Objectives To describe the epidemiology of people coinfected with hepatitis B virus (HBV) or hepatitis C virus (HCV) and HIV in San Francisco, the San Francisco Department of Public Health's Communicable Disease Control and Prevention Section and the HIV Epidemiology Section collaborated to link their registries. Methods In San Francisco, hepatitis reporting is primarily through passive laboratory-based surveillance, and HIV/AIDS reporting is primarily through laboratory-initiated active surveillance. We conducted the registry linkage in 2010 using a sequential algorithm. Results The registry match included 31,997 HBV-infected people who were reported starting in 1984; 10,121 HCV-infected people who were reported starting in 2001; and 34,551 HIV/AIDS cases reported beginning in 1981. Of the HBV and HCV cases, 6.3% and 12.6% were coinfected with HIV, respectively. The majority of cases were white males; however, black people were disproportionately affected. For more than 90% of the HBV/HIV cases, male-to-male sexual contact (men who have sex with men [MSM]) was the risk factor for HIV infection. Injection drug use was the most frequent risk factor for HIV infection among the HCV/HIV cases; however, 35.6% of the HCV/HIV coinfected males were MSM but not injection drug users. Conclusions By linking the two registries, we found new ways to foster collaborative work and expand our programmatic flexibility. This analysis identified particular populations at risk for coinfection, which can be used by viral hepatitis and HIV screening, prevention, and treatment programs to integrate, enhance, target, and prioritize prevention services and clinical care within the community to maximize health outcomes. PMID:24385655

Protocol and pilot data for establishing the Australian Stroke Clinical Registry.

PubMed

Cadilhac, Dominique A; Lannin, Natasha A; Anderson, Craig S; Levi, Christopher R; Faux, Steven; Price, Chris; Middleton, Sandy; Lim, Joyce; Thrift, Amanda G; Donnan, Geoffrey A

2010-06-01

Disease registries assist with clinical practice improvement. The Australian Stroke Clinical Registry aims to provide national, prospective, systematic data on processes and outcomes for stroke. We describe the methods of establishment and initial experience of operation. Australian Stroke Clinical Registry conforms to new national operating principles and technical standards for clinical quality registers. Features include: online data capture from acute public and private hospital sites; opt-out consent; expert consensus agreed core minimum dataset with standard definitions; outcomes assessed at 3 months poststroke; formal governance oversight; and formative evaluations for improvements. Qualitative feedback from sites indicates that the web-tool is simple to use and the user manuals, data dictionary, and training are appropriate. However, sites desire automated data-entry methods for routine demography variables and the opt-out consent protocol has sometimes been problematic. Data from 204 patients (median age 71 years, 54% males, 60% Australian) were collected from four pilot hospitals from June to October 2009 (mean, 50 cases per month) including ischaemic stroke (in 72%), intracerebral haemorrhage (16%), transient ischaemic attack (9%), and undetermined (3%), with only one case opting out. Australian Stroke Clinical Registry has been well established, but further refinements and broad roll-out are required before realising its potential of improving patient care through clinician feedback and allowance of local, national, and international comparative data.

Annual report of the United States transuranium and uranium registries, October 1, 1988--September 30, 1989

DOE Office of Scientific and Technical Information (OSTI.GOV)

Kathren, R.L.; Swint, M.J.; Dietert, S.E.

1990-04-01

This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1988 through September 30, 1989. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in man. The emphasis of the Transuranium Registry was directed toward evaluation of six whole body donations. In the five cases whose exposure was through inhalation, approximately half of the total body content of Pu-239 + 240 and a third of the Am-241 was found in the respiratory tract, suggesting that these nuclides are more avidly retained than predictedmore » by the current model of the International Commission on Radiological Protection. A significant fraction of these nuclides is found in soft tissues other than liver, and an uptake fraction of 0.2 is proposed for muscle, with a residence half-time of 10 years. Studies of these and routine autopsy cases indicate that more than 90% of the total respiratory tract plutonium or americium is in the lungs, with the remainder in the lymph nodes, and that a greater fraction is found in the lungs of smokers relative to the lymph nodes. Primary activities of the Uranium Registry centered around the acquisition of a whole body donation from a woman who had received an injection of colloidal thorium dioxide some 38 years prior to death.« less

Genetic, clinical and pharmacological determinants of out-of-hospital cardiac arrest: rationale and outline of the AmsteRdam Resuscitation Studies (ARREST) registry.

PubMed

Blom, M T; van Hoeijen, D A; Bardai, A; Berdowski, J; Souverein, P C; De Bruin, M L; Koster, R W; de Boer, A; Tan, H L

2014-01-01

Out-of-hospital cardiac arrest (OHCA) is a major public health problem. Recognising the complexity of the underlying causes of OHCA in the community, we aimed to establish the clinical, pharmacological, environmental and genetic factors and their interactions that may cause OHCA. We set up a large-scale prospective community-based registry (AmsteRdam Resuscitation Studies, ARREST) in which we prospectively include all resuscitation attempts from OHCA in a large study region in the Netherlands in collaboration with Emergency Medical Services. Of all OHCA victims since June 2005, we prospectively collect medical history (through hospital and general practitioner), and current and previous medication use (through community pharmacy). In addition, we include DNA samples from OHCA victims with documented ventricular tachycardia/fibrillation during the resuscitation attempt since July 2007. Various study designs are employed to analyse the data of the ARREST registry, including case-control, cohort, case only and case-cross over designs. We describe the rationale, outline and potential results of the ARREST registry. The design allows for a stable and reliable collection of multiple determinants of OHCA, while assuring that the patient, lay-caregiver or medical professional is not hindered in any way. Such comprehensive data collection is required to unravel the complex basis of OHCA. Results will be published in peer-reviewed journals and presented at relevant scientific symposia.

A clinical registry of dementia based on the principle of epidemiological surveillance

PubMed Central

Garre-Olmo, Josep; Flaqué, Margarita; Gich, Jordi; Pulido, Teresa Osuna; Turbau, Josefina; Vallmajo, Natalia; Viñas, Marta; López-Pousa, Secundí

2009-01-01

Background Traditional epidemiological studies do not allow elucidating the reality of referral and diagnosis patterns of dementia in routine clinical practice within a defined territory. This information is useful and necessary in order to plan and allocate healthcare resources. This paper presents the results from a dementia case registry based on epidemiological surveillance fundamentals. Methods Standardised registry of dementia diagnoses made in 2007 by specialised care centres in the Health Region of Girona (RSG) (Spain), which encompasses an area of 5,517 sq. km and a reference population of 690,207 inhabitants. Results 577 cases of dementia were registered, of which 60.7% corresponded to cases of Alzheimer's disease. Presenile dementia accounted for 9.3% of the cases. Mean time between the onset of symptoms and clinical diagnosis was 2.4 years and the severity of the dementia was mild in 60.7% of the cases. High blood pressure, a family history of dementia, dislipidemia, and a past history of depression were the most common conditions prior to the onset of the disease (>20%). Conclusion The ReDeGi is a viable epidemiological surveillance device that provides information about the clinical and demographic characteristics of patients diagnosed with dementia in a defined geographical area. PMID:19175921

Process improvement: a multi-registry database abstraction success story.

PubMed

Abrich, Victor; Rokey, Roxann; Devadas, Christopher; Uebel, Julie

2014-01-01

The St. Joseph Hospital/Marshfield Clinic Cardiac Database Registry submits data to the National Cardiovascular Data Registry (NCDR) and to the Society of Thoracic Surgeons (STS) National Database. Delayed chart abstraction is problematic, since hospital policy prohibits patient care clarifications made to the medical record more than 1 month after hospital discharge. This can also lead to late identification of missed care opportunities and untimely notification to providers. Our institution was 3.5 months behind in retrospective postdischarge case abstraction. A process improvement plan was implemented to shorten this delay to 1 month postdischarge. Daily demand of incoming cases and abstraction capacity were determined for 4 employees. Demand was matched to capacity, with the remaining time allocated to reducing backlog. Daily demand of new cases was 17.1 hours. Daily abstraction capacity was 24 hours, assuming 6 hours of effective daily abstraction time per employee, leaving 7 hours per day for backlogged case abstraction. The predicted time to reach abstraction target was 10 weeks. This was accomplished after 10 weeks, as predicted, leading to a 60% reduction of backlogged cases. The delay of postdischarge chart abstraction was successfully shortened from 3.5 months to 1 month. We intend to maintain same-day abstraction efficiency without reaccumulating substantial backlog.

Cancer incidence in North West Algeria (Mascara) 2000-2010: results from a population-based cancer registry

PubMed Central

Benarba, Bachir; Meddah, Boumedienne; Hamdani, Houria

2014-01-01

Cancer is a leading cause of death worldwide accounting for 7.4 million deaths. Cancer has become a major public health concern in Algeria. The aim of the present study was to estimate cancer incidence in Mascara Province based on the population-based cancer registry. We analyzed data from the cancer registry of Mascara covering all cancer cases diagnosed by all methods and included in the registry from 1st January 2000 to 31st December 2010. The results are presented as incidence rates of cases by site, sex, age, and crude rate. Age-standardized rates per 100,000 person-years (ASRs) were calculated, using the direct method of standardization to the world population. A total of 1875 cases of invasive cancer were recorded. The mean age of diagnosis for all cancers was 52.66 ± 0.5 in men and 59.18 ± 0.6 in women. The ASR for all cancers in females was 27.8 per 100,000, and that for males was 23.6 per 100,000. The most important finding of the present study was the high incidence of liver cancer among males and females in Mascara. Among females, breast cancer was the most frequently reported followed by Cervix uteri, liver and colon. The most frequent cancer types in males were lung, colon, esophagus and stomach and liver. Cancer incidence in Mascara province was lower than that reported in other national and regional registries. Findings of the present study revealed high incidence of liver cancer in the province, the highest in Algeria, suggesting high prevalence of risk factors. PMID:26417294

Validity of a computerized population registry of dementia based on clinical databases.

PubMed

Mar, J; Arrospide, A; Soto-Gordoa, M; Machón, M; Iruin, Á; Martinez-Lage, P; Gabilondo, A; Moreno-Izco, F; Gabilondo, A; Arriola, L

2018-05-08

The handling of information through digital media allows innovative approaches for identifying cases of dementia through computerized searches within the clinical databases that include systems for coding diagnoses. The aim of this study was to analyze the validity of a dementia registry in Gipuzkoa based on the administrative and clinical databases existing in the Basque Health Service. This is a descriptive study based on the evaluation of available data sources. First, through review of medical records, the diagnostic validity was evaluated in 2 samples of cases identified and not identified as dementia. The sensitivity, specificity and positive and negative predictive value of the diagnosis of dementia were measured. Subsequently, the cases of living dementia in December 31, 2016 were searched in the entire Gipuzkoa population to collect sociodemographic and clinical variables. The validation samples included 986 cases and 327 no cases. The calculated sensitivity was 80.2% and the specificity was 99.9%. The negative predictive value was 99.4% and positive value was 95.1%. The cases in Gipuzkoa were 10,551, representing 65% of the cases predicted according to the literature. Antipsychotic medication were taken by a 40% and a 25% of the cases were institutionalized. A registry of dementias based on clinical and administrative databases is valid and feasible. Its main contribution is to show the dimension of dementia in the health system. Copyright © 2018 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

[Hansen's disease in the northern region of Brazil--1986].

PubMed

Britto, R da S

1989-12-01

Some general facts about Hansen's Disease are presented: in the world, in the Americas, in 1986, with the purpose to focalize on the Northern Region of Brazil (Amazon Valley) where an attempt is made to specify, State, the clinical forms in the active registry, the respective coefficients of Prevalence, about the cases detected during the year, by clinical forms and the correspondent Coefficient of Incidence, the age range of less than 15 years, and above 15 years; and to analyze according to the township in the State of Amazonas in a series of 8 years, from 1979 to 1986, the registered cases under control and also without control, the new cases, by clinical form and Coefficient of Incidence, the positive cases among students in the capital and also in the country, and with more details, still by township and by Public Health Registry, in 1986, with the population, new cases, and Coefficient of Incidence, cases of the active registry, cases under control, Coefficient of Incidence, the relationship between patients/inhabitants, cases according to the decreasing intensity as far as the Prevalence and Health Department Regions: all this to give an idea, in detail, inclusive statistics, of the real position of Hansen's Disease in the Northern Region (Amazon Valley), with the highest figures of Prevalence and even of Incidence, in comparison with other Regions of the country, and to stress the grave situation of the endemic proportions of the disease, in Brazil in general and in that Regions, in particular.

Metadata registry and management system based on ISO 11179 for cancer clinical trials information system

PubMed Central

Park, Yu Rang; Kim*, Ju Han

2006-01-01

Standardized management of data elements (DEs) for Case Report Form (CRF) is crucial in Clinical Trials Information System (CTIS). Traditional CTISs utilize organization-specific definitions and storage methods for Des and CRFs. We developed metadata-based DE management system for clinical trials, Clinical and Histopathological Metadata Registry (CHMR), using international standard for metadata registry (ISO 11179) for the management of cancer clinical trials information. CHMR was evaluated in cancer clinical trials with 1625 DEs extracted from the College of American Pathologists Cancer Protocols for 20 major cancers. PMID:17238675

Prenatal diagnostic procedures used in pregnancies with congenital malformations in 14 regions of Europe.

PubMed

Garne, Ester; Loane, Maria; de Vigan, Catherine; Scarano, Gioacchino; de Walle, Hermien; Gillerot, Yves; Stoll, Claude; Addor, Marie-Claude; Stone, David; Gener, Blanca; Feijoo, Maria; Mosquera-Tenreiro, Carmen; Gatt, Miriam; Queisser-Luft, Annette; Baena, Neus; Dolk, Helen

2004-11-01

To investigate outcomes of ultrasound investigations (US) and invasive diagnostic procedures in cases of congenital malformations (CM), and to compare the use of invasive prenatal test techniques (amniocentesis (AC) versus chorionic villus sampling (CVS)) among European populations. Analysis of data from population-based registries of CM. 25 400 cases of CM recorded by 14 EUROCAT registries covering a total population of 1,013,352 births 1995-99. US were performed in 91% of cases, and positively detected CM in 35% of cases. AC was performed in 24% of the cases and CVS in 3% of cases. Thirty-eight percent of invasive tests gave positive results. Fifty-two percent of cases with maternal age > or = 35 years had an invasive test performed compared to 20% of cases with younger mothers. Considerable variation was found between registries in the uptake rate of invasive tests in cases with older maternal age and on the use of invasive tests with only four regions employing CVS techniques in at least a third of the cases having invasive tests. For chromosomal anomalies US gave positive results in 46% of cases with maternal age < 35 years with US performed and in 36% of cases with maternal age > or = 35 years with US performed. Prenatal US was performed in 91% of all pregnancies with CM but the test was only positive in a third of the cases. There was large regional variation in the uptake rate of invasive tests with maternal age of 35 years or more. For every CVS carried out there were nine AC tests. US is an important tool in the prenatal diagnosis of chromosomal anomalies in Europe. Copyright 2004 John Wiley & Sons, Ltd.

Quality assessment and improvement of nationwide cancer registration system in Taiwan: a review.

PubMed

Chiang, Chun-Ju; You, San-Lin; Chen, Chien-Jen; Yang, Ya-Wen; Lo, Wei-Cheng; Lai, Mei-Shu

2015-03-01

Cancer registration provides core information for cancer surveillance and control. The population-based Taiwan Cancer Registry was implemented in 1979. After the Cancer Control Act was promulgated in 2003, the completeness (97%) and data quality of cancer registry database has achieved at an excellent level. Hospitals with 50 or more beds, which provide outpatient and hospitalized cancer care, are recruited to report 20 items of information on all newly diagnosed cancers to the central registry office (called short-form database). The Taiwan Cancer Registry is organized and funded by the Ministry of Health and Welfare. The National Taiwan University has been contracted to operate the registry and organized an advisory board to standardize definitions of terminology, coding and procedures of the registry's reporting system since 1996. To monitor the cancer care patterns and evaluate the cancer treatment outcomes, central cancer registry has been reformed since 2002 to include detail items of the stage at diagnosis and the first course of treatment (called long-form database). There are 80 hospitals, which count for >90% of total cancer cases, involved in the long-form registration. The Taiwan Cancer Registry has run smoothly for >30 years, which provides essential foundation for academic research and cancer control policy in Taiwan. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

[Drug registries: post-marketing evaluation of the benefit-risk profile and promotion of appropriateness. The regional point of view].

PubMed

Martelli, Luisa; Venegoni, Mauro

2013-06-01

Italian Regions and the Italian regulatory agency share a common interest in promoting the appropriateness of drug use, containing drug expenditure and acquiring additional evidence on the effectiveness and safety of drugs. Drug registries can help attaining these objectives. Specifically, the registries implemented in Italy were able to cover the first two objectives, whereas some critical issues were raised on the third one. For instance, the data recorded in the registries are not available at regional level to conduct safety and effectiveness investigations. This is a paradox, when considering that drugs included in the registries have a risk-benefit profile that is only partially defined at the moment of marketing. Currently, researchers and regions can conduct epidemiological research (cohort and case control studies), on the basis of record-linkage procedures, on all drugs prescribed in general practice (which are older drugs with a better defined risk-benefit profile). The expected outcomes of registries should be more clearly defined: when the main aim is to promote appropriateness, the recording of only a very limited amount of data should be required (to avoid a bureaucratic burden on clinicians).The Italian centers of the ENCePP network might play an important role in planning and conducting drug registries: through the presence in the steering committees of the registries, and in conducting epidemiological studies that make the most of this powerful instrument.

Primary Healthcare-based Diabetes Registry in Puducherry: Design and Methods

PubMed Central

Lakshminarayanan, Subitha; Kar, Sitanshu Sekhar; Gupta, Rajeev; Xavier, Denis; Bhaskar Reddy, S. Vijaya

2017-01-01

Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry. PMID:28553589

Gender and Geographic Differences in Developmental Delays among Young Children: Analysis of the Data from the National Registry in Taiwan

ERIC Educational Resources Information Center

Lai, Der-Chung; Tseng, Yen-Cheng; Guo, How-Ran

2011-01-01

Although developmental delays are not uncommon in children, the incidence is seldom assessed, and the reported prevalence varies widely. In Taiwan, the government mandates the reporting of suspected cases. Using the national registry data, we conducted a study to estimate the incidence and prevalence of developmental delays in young children in…

Cancer patterns among children of Turkish descent in Germany: A study at the German Childhood Cancer Registry

PubMed Central

Spallek, Jacob; Spix, Claudia; Zeeb, Hajo; Kaatsch, Peter; Razum, Oliver

2008-01-01

Background Cancer risks of migrants might differ from risks of the indigenous population due to differences in socioeconomic status, life style, or genetic factors. The aim of this study was to investigate cancer patterns among children of Turkish descent in Germany. Methods We identified cases with Turkish names (as a proxy of Turkish descent) among the 37,259 cases of childhood cancer registered in the German Childhood Cancer Registry (GCCR) during 1980–2005. As it is not possible to obtain reference population data for children of Turkish descent, the distribution of cancer diagnoses was compared between cases of Turkish descent and all remaining (mainly German) cases in the registry, using proportional cancer incidence ratios (PCIRs). Results The overall distribution of cancer diagnoses was similar in the two groups. The PCIRs in three diagnosis groups were increased for cases of Turkish descent: acute non-lymphocytic leukaemia (PCIR 1.23; CI (95%) 1.02–1.47), Hodgkin's disease (1.34; 1.13–1.59) and Non-Hodgkin/Burkitt lymphoma (1.19; 1.02–1.39). Age, sex, and period of diagnosis showed no influence on the distribution of diagnoses. Conclusion No major differences were found in cancer patterns among cases of Turkish descent compared to all other cases in the GCCR. Slightly higher proportions of systemic malignant diseases indicate that analytical studies involving migrants may help investigating the causes of such cancers. PMID:18462495

Infections in patients treated with tumor necrosis factor antagonists: incidence, etiology and mortality in the BIOBADASER registry.

PubMed

Pérez-Sola, María José; Torre-Cisneros, Julián; Pérez-Zafrilla, Beatriz; Carmona, Loreto; Descalzo, Miguel Angel; Gómez-Reino, Juan Jesús

2011-11-12

Whether the use of tumor necrosis factor antagonists increases the risk of infection remains a subject of open debate. Developing effective strategies of prevention and empirical treatment entails carefully establishing the etiology and prognosis of the infections. Analysis of the Spanish registry BIOBADASER (Feb-2000 to Jan-2006), a national drug safety registry of patients with rheumatic diseases. 907 episodes of infection occurring in 6,969 patients were analyzed. The infection incidence observed was 53.09 cases/1,000 patients-years (CI 95% 49.69-56.66). The most frequent infections were skin infection (12.18 cases/1,000 patients-yrs), pneumonia (5.97 cases/1,000 patients-yrs), cystitis (3.92 cases/1,000 patients-yrs), tuberculosis (3.51 cases/1,000 patients-yrs) and arthritis (3.76 cases/1,000 patients-yrs). Staphylococcus aureus, Staphylococcus epidermidis, Escherichia coli, Pseudomonas aeruginosa and Salmonella spp. emerged as important pathogens. Varicella zoster virus and Herpes simplex virus caused most cases of viral infections. Mucocutaneous candidiasis accounted for most fungal infections. Mortality was increased in infected patients (log-rank test p<0.0001). Pneumonia, sepsis, tuberculosis, abdominal infection and endocarditis were associated with significant attributable mortality. A significant number of bacterial, viral and fungal infections occurred in patients with rheumatic diseases treated with TNF antagonists. The information of this study can illuminate clinicians globally on how to address infection in this vulnerable group of patients. Copyright © 2010 Elsevier España, S.L. All rights reserved.

Diffusion, outcomes and implementation of minimally invasive liver surgery: a snapshot from the I Go MILS (Italian Group of Minimally Invasive Liver Surgery) Registry.

PubMed

Aldrighetti, Luca; Ratti, Francesca; Cillo, Umberto; Ferrero, Alessandro; Ettorre, Giuseppe Maria; Guglielmi, Alfredo; Giuliante, Felice; Calise, Fulvio

2017-09-01

The Italian Group of MILS (I Go MILS) prospective registry was established in 2014 with the goals to create a hub for data and projects on a national basis and to promote the diffusion and implementation of MILS programs on a national scale. The primary endpoint of the present study is to give a snapshot of the real diffusion and outcomes of MILS in Italy, while analyzing the role of the registry in the implementation of MILS programs nationwide. The I Go MILS Registry is a prospective and intention-to-treat registry opened to any Italian center performing MILS, without restriction criteria based on number of procedures. The Registry is developed through the eClinical, an electronic platform for the management of clinical trials and is based on 34 clinical variables, regarding indication, intra- and postoperative course. Clinical outcomes and data regarding implementation of MILS activity have been analyzed for the aim of the study. Between November 2014 and June 2017, data from 1678 MILS performed in 48 centers have been collected (mean number of procedures per center 35, range 1-302). 22% of procedures were performed for benign and 78% for malignant disease (HCC constituted the 49.1% and CRLM the 31.2% of malignant tumors). Major liver resections (>3 liver segments), including right and left hepatectomies, trisectionectomies and ALPPS procedures were 10% of the series. Mean blood loss was 200 ± 230 mL Morbidity rate was 20.5% and mortality was 0.3%. 10.4% of cases were converted to open approach. Median length of stay was 5 days. MILS/total resections ratio in 13 experienced centers increased from 14 to 30% after Registry establishment. MILS programs are well established in Italy, with progressive increase both in the number of cases and in the numerosity of centers. The I Go MILS Registry is playing a crucial role in monitoring the development of MILS in the real world on a national basis while giving a significant contribution to the implementation of MILS programs.

A Budget Impact Model of Hemophilia Bypassing Agent Prophylaxis Relative to Recombinant Factor VIIa On-Demand.

PubMed

Mehta, Darshan A; Oladapo, Abiola O; Epstein, Joshua D; Novack, Aaron R; Neufeld, Ellis J; Hay, Joel W

2016-02-01

Hemophilia patients use factor-clotting concentrates (factor VIII for hemophilia A and factor IX for hemophilia B) for improved blood clotting. These products are used to prevent or stop bleeding episodes. However, some hemophilia patients develop inhibitors (i.e., the patient's immune system develops antibodies against these factor concentrates). Hence, these patients do not respond well to the factor concentrates. A majority of hemophilia patients with inhibitors are managed on-demand with the following bypassing agents: recombinant factor VIIa (rFVIIa) and activated prothrombin complex concentrate (aPCC). The recently published U.S. registries Dosing Observational Study in Hemophilia (DOSE) and Hemostasis and Thrombosis Research Society (HTRS) reported higher rFVIIa on-demand use for bleed management than previously described. To estimate aPCC and rFVIIa prophylaxis costs relative to rFVIIa on-demand treatment cost based on rFVIIa doses reported in U.S. registries. A literature-based cost model was developed assuming a base case on-demand annual bleed rate (ABR) of 28.7 per inhibitor patient, which was taken from a randomized phase 3 clinical trial. The doses for rFVIIa on-demand were taken from the median dose per bleed reported by the DOSE and HTRS registries. Model inputs for aPCC and rFVIIa prophylaxis (i.e., dosing and efficacy) were derived from respective randomized clinical trials. Cost analysis was from the U.S. payer perspective, and only direct drug costs were considered. The drug cost was based on the Medicare Part B 2014 average sale price (ASP). Two-way sensitivity and threshold analyses were performed by simultaneously varying on-demand ABR, prophylaxis efficacy, and unit drug cost. In addition to studying relative costs associated with on-demand and prophylaxis treatments, relative cost per bleeding episode avoided were also calculated for aPCC and rFVIIa prophylaxis treatments. The prophylaxis efficacy reported in the trials were used to determine the number of bleeding episodes avoided. Based on the median on-demand dose of 695 mcg per kg per bleed, reported by the DOSE registry, the annual rFVIIa on-demand cost was $34,009 per kg of body weight. The annual rFVIIa on-demand cost was $22,020 per kg of body weight when the median dose of 450 mcg per kg per bleed reported by the HTRS registry was considered. The annual cost rose to $38,461 per kg of body weight when the rFVIIa on-demand dose of 786 mcg per kg per bleed among patients infusing an initial dose ≥ 250 mcg per kg was considered. The aPCC (85 units per kg per every other day) and rFVIIa (90 mcg per kg per every day) annual prophylaxis costs were $26,536 and $60,700, respectively. Also, aPCC and rFVIIa prophyaxis treatments were estimated to prevent a total of 20.8 and 12.9 annual bleeding episodes, respectively. When compared with the on-demand dose of 695 mcg per kg per bleed (DOSE registry), the annual aPCC and rFVIIa prophylaxis costs were 21.9% lower and 78.4% higher, respectively. Additionally, aPCC prophylaxis saved $360 per kg for each bleeding episode avoided. rFVIIa prophylaxis cost $2,066 per kg for each bleeding episode avoided. Compared with the on-demand dose of 450 mcg per kg per bleed (HTRS registry), aPCC and rFVIIa prophylaxis costs were 20.5% and 174.9% higher, respectively. In this case, aPCC and rFVIIa prophylaxis treatment costs were $217 per kg and $2,995 per kg, respectively, for each bleeding episode avoided. aPCC and rFVIIa prophylaxis costs were 31.0% lower and 57.8% higher, respectively, when compared with the rFVIIa on-demand dose of 786 mcg per kg per bleed, among patients infusing an initial dose ≥ 250 mcg per kg (HTRS registry). In this case, aPCC prophylaxis saved $573 per kg for each bleeding episode avoided, while rFVIIa prophylaxis costs $1,724 per kg for each bleeding episode avoided. Results of the 2-way sensitivity analyses were robust in the majority of the scenarios considered. aPCC prophylaxis may be cost saving for managing hemophilia patients with inhibitors who bleed frequently and infuse significant quantities of rFVIIa on-demand.

The evaluation of complex clinical trial protocols: resources available to research ethics committees and the use of clinical trial registries--a case study.

PubMed

Homedes, Núria; Ugalde, Antonio

2015-06-01

To assess the potential role of clinical trial (CT) registries and other resources available to research ethics committees (RECs) in the evaluation of complex CT protocols in low-income and middle-income countries. Using a case study approach, the authors examined the decision-making process of a REC in Argentina and its efforts to use available resources to decide on a complex protocol. We also analysed the information in the USA and other CT registries and consulted 24 CT experts in seven countries. Information requested by the Argentinean REC from other national RECs and ethics' experts was not useful to verify the adequacy of the REC's decision whether or not to approve the CT. The responses from the national regulatory agency and the sponsor were not helpful either. The identification of international resources that could assist was beyond the REC's capability. The information in the USA and other CT registries is limited, and at times misleading; and its accuracy is not verified by register keepers. RECs have limited access to experts and institutions that could assist them in their deliberations. Sponsors do not always answer RECs' request for information to properly conduct the ethical and methodological assessment of CT protocols. The usefulness of the CT registries is curtailed by the lack of appropriate codes and by data errors. Information about reasons for rejection, withdrawal or suspension of the trial should be included in the registries. Establishing formal channels of communication among national and foreign RECs and with independent international reference centres could strengthen the ethical review of CT protocols. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Establishing of National Birth Defects Registry in Thailand.

PubMed

Pangkanon, Suthipong; Sawasdivorn, Siraporn; Kuptanon, Chulaluck; Chotigeat, Uraiwan; Vandepitte, Warunee

2014-06-01

Deaths attributed to birth defects are a major cause of infant and under-five mortality as well as lifetime disabilities among those who survive. In Thailand, birth defects contribute to 21% of neonatal deaths. There is currently no systematic registry for congenital anomalies in Thailand. Queen Sirikit National Institute of Child Health has initiated a Thailand Birth Defects Registry to capture birth defects among newborn infants. To establish the national birth defects registry in order to determine the burden of birth defects in Thailand. The birth defects data come from four main sources: National Birth Registry Database; National Health Security Office's reimbursement database; Online Birth Defect Registry Database designed to capture new cases that were detected later; and birth defects data from 20 participated hospitals. All data are linked by unique 13-digit national identification number and International Classification of Diseases (ICD)-10 codes. This registry includes 19 common structural birth defects conditions and pilots in 20 hospitals. The registry is hospital-based, hybrid reporting system, including only live births whose information was collected up to 1 year of age. 3,696 infants out of 67,813 live births (8.28% of total live births in Thailand) were diagnosed with congenital anomalies. The prevalence rate of major anomalies was 26.12 per 1,000 live births. The five most common birth defects were congenital heart defects, limb anomalies, cleft lip/cleft palate, Down syndrome, and congenital hydrocephalus respectively. The present study established the Birth Defects Registry by collecting data from four databases in Thailand. Information obtained from this registry and surveillance is essential in the planning for effective intervention programs for birth defects. The authors suggest that this program should be integrated in the existing public health system to ensure sustainability.

Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries.

PubMed

Verstappen, Suzanne M M; Askling, Johan; Berglind, Niklas; Franzen, Stefan; Frisell, Thomas; Garwood, Christopher; Greenberg, Jeffrey D; Holmqvist, Marie; Horne, Laura; Lampl, Kathy; Michaud, Kaleb; Nyberg, Fredrik; Pappas, Dimitrios A; Reed, George; Symmons, Deborah P M; Tanaka, Eiichi; Tran, Trung N; Yamanaka, Hisashi; Ho, Meilien

2015-12-01

Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5% IORRA, 18.9% CORRONA, 24.7% NOAR, 27.7% CORRONA International, and 36.8% SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5% in IORRA to 7.9% in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions. © 2015, American College of Rheumatology.

Trends in Stroke Incidence and 28-Day Case Fatality in a Nationwide Stroke Registry of a Multiethnic Asian Population.

PubMed

Tan, Chuen Seng; Müller-Riemenschneider, Falk; Ng, Sheryl Hui Xian; Tan, Pei Zheng; Chan, Bernard P L; Tang, Kok-Foo; Ahmad, Aftab; Kong, Keng He; Chang, Hui Meng; Chow, Khuan Yew; Koh, Gerald Choon-Huat; Venketasubramanian, Narayanaswamy

2015-10-01

This study investigated trends in stroke incidence and case fatality overall and according to sex, age, ethnicity, and stroke subtype in a multiethnic Asian population. The Singapore Stroke Registry identifies all stroke cases in all public hospitals using medical claims, hospital discharge summaries, and death registry data. Age-standardized incidence rates and 28-day case-fatality rates were calculated for individuals aged ≥15 years between 2006 and 2012. To estimate the annual percentage change of the rates, a linear regression model was fitted to the log rates, and a Wald test was performed to test for trend. P values <0.05 were considered significant. A total of 40 623 cases were recorded. The total stroke incidence fell by ≈12.0%, and case fatality fell by 17.2% in the study. Declining trends in stroke incidence were stronger in women (female: -2.94; 95% confidence interval [CI], -3.43 to -2.44; male: -1.80; 95% CI, -2.58 to -1.02); in the older age groups (≥65 years: -3.62; 95% CI, -4.30 to -2.94; 50-64 years: -1.26; 95% CI, -1.97 to -0.55; <50 years: 3.33; 95% CI, 1.49 to 5.20), in Chinese (-2.64; 95% CI, -3.15 to -2.13), Indians (-3.78; 95% CI, -5.93 to -1.58), and others (-12.73; 95% CI, -18.93 to -6.06) compared with Malays (2.58; 95% CI, 1.17 to 4.02); and in ischemic stroke subtype (ischemic: -2.43; 95% CI, -3.13 to -1.73; hemorrhagic: -1.02; 95% CI, -2.04 to 0.01). Subgroup-specific findings for case fatality were similar. This is the first countrywide hospital-based registry study in a multiethnic Asian population, and it revealed marked overall reductions in stroke incidence and case fatality. However, it also identified important population groups with less favorable trends, especially younger adults and those of Malay ethnicity. © 2015 American Heart Association, Inc.

Disparities in cancer stage at diagnosis and survival of Aboriginal and non-Aboriginal South Australians.

PubMed

Banham, David; Roder, David; Keefe, Dorothy; Farshid, Gelareh; Eckert, Marion; Cargo, Margaret; Brown, Alex

2017-06-01

This study tested the utility of retrospectively staging cancer registry data for comparing stage and stage-specific survivals of Aboriginal and non-Aboriginal people. Differences by area level factors were also explored. This test dataset comprised 950 Aboriginal cases and all other cases recorded on the South Australian cancer registry with a 1977-2010 diagnosis. A sub-set of 777 Aboriginal cases diagnosed in 1990-2010 were matched with randomly selected non-Aboriginal cases by year of birth, diagnostic year, sex, and primary site of cancer. Competing risk regression summarised associations of Aboriginal status, stage, and geographic attributes with risk of cancer death. Aboriginal cases were 10 years younger at diagnosis, more likely to present in recent diagnostic years, to be resident of remote areas, and have primary cancer sites of head & neck, lung, liver and cervix. Risk of cancer death was associated in the matched analysis with more advanced stage at diagnosis. More Aboriginal than non-Aboriginal cases had distant metastases at diagnosis (31.3% vs 22.0, p<0.001). After adjusting for stage, remote-living Aboriginal residents had higher risks of cancer death than Aboriginal residents of metropolitan areas. Non-Aboriginal cases had the lowest risk of cancer death. Retrospective staging proved to be feasible using registry data. Results indicated more advanced stages for Aboriginal than matched non-Aboriginal cases. Aboriginal people had higher risks of cancer death, which persisted after adjusting for stage, and applied irrespective of remoteness of residence, with highest risk of death occurring among Aboriginal people from remote areas. Copyright © 2017 Elsevier Ltd. All rights reserved.

An ontology-based annotation of cardiac implantable electronic devices to detect therapy changes in a national registry.

PubMed

Rosier, Arnaud; Mabo, Philippe; Chauvin, Michel; Burgun, Anita

2015-05-01

The patient population benefitting from cardiac implantable electronic devices (CIEDs) is increasing. This study introduces a device annotation method that supports the consistent description of the functional attributes of cardiac devices and evaluates how this method can detect device changes from a CIED registry. We designed the Cardiac Device Ontology, an ontology of CIEDs and device functions. We annotated 146 cardiac devices with this ontology and used it to detect therapy changes with respect to atrioventricular pacing, cardiac resynchronization therapy, and defibrillation capability in a French national registry of patients with implants (STIDEFIX). We then analyzed a set of 6905 device replacements from the STIDEFIX registry. Ontology-based identification of therapy changes (upgraded, downgraded, or similar) was accurate (6905 cases) and performed better than straightforward analysis of the registry codes (F-measure 1.00 versus 0.75 to 0.97). This study demonstrates the feasibility and effectiveness of ontology-based functional annotation of devices in the cardiac domain. Such annotation allowed a better description and in-depth analysis of STIDEFIX. This method was useful for the automatic detection of therapy changes and may be reused for analyzing data from other device registries.

Occupational risk factors for testicular cancer: a registry-based case-control study in Rhineland Palatinate – Germany

PubMed Central

Yousif, Lamyaa; Hammer, Gaël P.; Emrich, Katharina; Blettner, Maria; Zeeb, Hajo

2013-01-01

Objectives: Testicular cancer affects mainly men below the age of 50. An association with occupation and social status has been suggested but risk factors are not well understood. A registry-based case-control study focusing on occupation was performed in Germany. Methods: All 348 testicular cancer cases with available gainful occupational information registered between 2000 and 2005; as well as 564 suitable controls (from a pool of other cancers) were drawn from the Cancer Registry of Rhineland-Palatinate. Unconditional logistic regression was used to compute odds ratios (OR) and associated 95% confidence intervals (CI). Results: Slightly elevated OR were observed for technicians and related professionals (OR 1.62, 95% CI 1.00–2.63) and for clerical support workers (OR 1.71, 95% CI 1.14–2.56). This increase was highest in the age group 20–50 for technicians (OR 2.02, 95% CI 1.23–3.33) and clerks (OR 2.00, 95% CI 1.30–3.09), respectively. An association with testicular cancer was observed for no other occupation. Conclusion: An increased risk of testicular cancer was observed for technicians and related professionals and clerical support workers. This could be related to socioeconomic status or sedentary life style, two factors that were identified in previous studies. While the feasibility of a purely registry-based study was shown, missing occupational data and the choice of cancer controls represent challenges to the validity of this approach. PMID:24265602

A Dutch Nationwide Bariatric Quality Registry: DATO.

PubMed

Poelemeijer, Youri Q M; Liem, Ronald S L; Nienhuijs, Simon W

2017-12-22

In the Netherlands, the number of bariatric procedures increased exponentially in the 90s. To ensure and improve the quality of bariatric surgery, the nationwide Dutch Audit for Treatment of Obesity (DATO) was established in 2014. The audit was coordinated by the Dutch Institute for Clinical Auditing (DICA). This article provides a review of the aforementioned process in establishing a nationwide registry in the Netherlands. In collaboration with the DATO's scientific committee and other stakeholders, an annual list of several external quality indicators was formulated. This list consists of volume, process, and outcome indicators. In addition to the annual external indicators, the database permits individual hospitals to analyze their own data. The dashboard provides several standardized reports and detailed quality indicators, which are updated on a weekly base. Since the start, all 18 Dutch bariatric centers participated in the nationwide audit. A total of 21,941 cases were registered between 2015 and 2016. By 2016, the required variables were registered in 94.3% of all cases. A severe complicated course was seen in 2.87%, and mortality in 0.05% in 2016. The first-year follow-up shows a > 20% TWL in 86.1% of the registered cases. The DATO has become rapidly a mature registry. The well-organized structure of the national audit institution DICA and governmental funding were essential. However, most important were the bariatric teams themselves. The authors believe reporting the results from the registry has already contributed to more knowledge and acceptance by other health care providers.

Validation of the 'United Registries for Clinical Assessment and Research' [UR-CARE], a European Online Registry for Clinical Care and Research in Inflammatory Bowel Disease.

PubMed

Burisch, Johan; Gisbert, Javier P; Siegmund, Britta; Bettenworth, Dominik; Thomsen, Sandra Bohn; Cleynen, Isabelle; Cremer, Anneline; Ding, Nik John Sheng; Furfaro, Federica; Galanopoulos, Michail; Grunert, Philip Christian; Hanzel, Jurij; Ivanovski, Tamara Knezevic; Krustins, Eduards; Noor, Nurulamin; O'Morain, Neil; Rodríguez-Lago, Iago; Scharl, Michael; Tua, Julia; Uzzan, Mathieu; Ali Yassin, Nuha; Baert, Filip; Langholz, Ebbe

2018-04-27

The 'United Registries for Clinical Assessment and Research' [UR-CARE] database is an initiative of the European Crohn's and Colitis Organisation [ECCO] to facilitate daily patient care and research studies in inflammatory bowel disease [IBD]. Herein, we sought to validate the database by using fictional case histories of patients with IBD that were to be entered by observers of varying experience in IBD. Nineteen observers entered five patient case histories into the database. After 6 weeks, all observers entered the same case histories again. For each case history, 20 key variables were selected to calculate the accuracy for each observer. We assumed that the database was such that ≥ 90% of the entered data would be correct. The overall proportion of correctly entered data was calculated using a beta-binomial regression model to account for inter-observer variation and compared to the expected level of validity. Re-test reliability was assessed using McNemar's test. For all case histories, the overall proportion of correctly entered items and their confidence intervals included the target of 90% (Case 1: 92% [88-94%]; Case 2: 87% [83-91%]; Case 3: 93% [90-95%]; Case 4: 97% [94-99%]; Case 5: 91% [87-93%]). These numbers did not differ significantly from those found 6 weeks later [NcNemar's test p > 0.05]. The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR-CARE has the potential to enhance future European collaborations regarding clinical research in IBD.

Pediatric Contact Dermatitis Registry Inaugural Case Data.

PubMed

Goldenberg, Alina; Mousdicas, Nico; Silverberg, Nanette; Powell, Douglas; Pelletier, Janice L; Silverberg, Jonathan I; Zippin, Jonathan; Fonacier, Luz; Tosti, Antonella; Lawley, Leslie; Wu Chang, Mary; Scheman, Andrew; Kleiner, Gary; Williams, Judith; Watsky, Kalman; Dunnick, Cory A; Frederickson, Rachel; Matiz, Catalina; Chaney, Keri; Estes, Tracy S; Botto, Nina; Draper, Michelle; Kircik, Leon; Lugo-Somolinos, Aida; Machler, Brian; Jacob, Sharon E

2016-01-01

Little is known about the epidemiology of allergic contact dermatitis (ACD) in US children. More widespread diagnostic confirmation through epicutaneous patch testing is needed. The aim was to quantify patch test results from providers evaluating US children. The study is a retrospective analysis of deidentified patch test results of children aged 18 years or younger, entered by participating providers in the Pediatric Contact Dermatitis Registry, during the first year of data collection (2015-2016). One thousand one hundred forty-two cases from 34 US states, entered by 84 providers, were analyzed. Sixty-five percent of cases had one or more positive patch test (PPT), with 48% of cases having 1 or more relevant positive patch test (RPPT). The most common PPT allergens were nickel (22%), fragrance mix I (11%), cobalt (9.1%), balsam of Peru (8.4%), neomycin (7.2%), propylene glycol (6.8%), cocamidopropyl betaine (6.4%), bacitracin (6.2%), formaldehyde (5.7%), and gold (5.7%). This US database provides multidisciplinary information on pediatric ACD, rates of PPT, and relevant RPPT reactions, validating the high rates of pediatric ACD previously reported in the literature. The registry database is the largest comprehensive collection of US-only pediatric patch test cases on which future research can be built. Continued collaboration between patients, health care providers, manufacturers, and policy makers is needed to decrease the most common allergens in pediatric consumer products.

Misclassified maternal deaths among East African immigrants in Sweden.

PubMed

Elebro, Karin; Rööst, Mattias; Moussa, Kontie; Johnsdotter, Sara; Essén, Birgitta

2007-11-01

Western countries have reported an increased risk of maternal mortality among African immigrants. This study aimed to identify cases of maternal mortality among immigrants from the Horn of Africa living in Sweden using snowball sampling, and verify whether they had been classified as maternal deaths in the Cause of Death Registry. Three "locators" contacted immigrants from Somalia, Eritrea, and Ethiopia to identify possible cases of maternal mortality. Suspected deaths were scrutinised through verbal autopsy and medical records. Confirmed instances, linked by country of birth, were compared with Registry statistics. We identified seven possible maternal deaths of which four were confirmed in medical records, yet only one case had been classified as such in the Cause of Death Registry. At least two cases, a significant number, seemed to be misclassified. The challenges of both cultural and medical competence for European midwives and obstetricians caring for non-European immigrant mothers should be given more attention, and the chain of information regarding maternal deaths should be strengthened. We propose a practice similar to the British confidential enquiry into maternal deaths. In Sweden, snowball sampling was valuable for contacting immigrant communities for research on maternal mortality; by strengthening statistical validity, it can contribute to better maternal health policy in a multi-ethnic society.

Ethical issues in using data from quality management programs.

PubMed

Nerenz, David R

2009-08-01

Since the advent of formal, data-driven quality improvement programs in health care in the late 1980s and early 1990s, there are have been questions raised about requirements for ethical committee review of quality improvement activities. A form of consensus emerged through a series of articles published between 1996 and 2007, but there is still significant variation among ethics review committees and individual project leaders in applying broad policies on requirements for committee review and/or written informed consent by participants. Recent developments in quality management, particularly the creation and use of multi-site disease registries, have raised new questions about requirements for review and consent, since the activities often have simultaneous research and quality improvement goals. This article discusses ways in which policies designed for local quality improvement projects and data bases may be adapted to apply to multi-site registries and research projects related to them.

National registry of hemoglobinopathies in Spain (REPHem).

PubMed

Cela, Elena; Bellón, José M; de la Cruz, María; Beléndez, Cristina; Berrueco, Rubén; Ruiz, Anna; Elorza, Izaskun; Díaz de Heredia, Cristina; Cervera, Aurea; Vallés, Griselda; Salinas, J Antonio; Coll, M Teresa; Bermúdez, Mar; Prudencio, Marta; Argilés, Bienvenida; Vecilla, Cruz

2017-07-01

Although highly prevalent throughout the world, the accurate prevalence of hemoglobinopathies in Spain is unknown. This study presents data on the national registry of hemoglobinopathies of patients with thalassemia major (TM), thalassemia intermedia (TI), and sickle cell disease (SCD) in Spain created in 2014. Fifty centers reported cases retrospectively. Data were registered from neonatal screening or from the first contact at diagnosis until last follow-up or death. Data of the 715 eligible patients were collected: 615 SCD (497 SS, 64 SC, 54 SBeta phenotypes), 73 thalassemia, 9 CC phenotype, and 18 other variants. Most of the SCD patients were born in Spain (65%), and 51% of these were diagnosed at newborn screening. Median age at the first diagnosis was 0.4 years for thalassemia and 1.0 years for SCD. The estimated incidence was 0.002 thalassemia cases and 0.03 SCD cases/1,000 live births. Median age was 8.9 years (0.2-33.7) for thalassemia and 8.1 years (0.2-32.8) for SCD patients. Stroke was registered in 16 SCD cases. Transplantation was performed in 43 TM and 23 SCD patients at a median age of 5.2 and 7.8 years, respectively. Twenty-one patients died (3 TM, 17 SCD, 1 CC) and 200 were lost to follow-up. Causes of death were related to transplantation in three patients with TM and three patients with SCD. Death did not seem to be associated with SCD in six patients, but nine patients died secondary to disease complications. Overall survival was 95% at 15 years of age. The registry provides data about the prevalence of hemoglobinopathies in Spain and will permit future cohort studies and the possibility of comparison with other registries. © 2016 Wiley Periodicals, Inc.

Use of Proton Pump Inhibitors and the Risk of Listeriosis: A Nationwide Registry-based Case-Control Study.

PubMed

Kvistholm Jensen, Anne; Simonsen, Jacob; Ethelberg, Steen

2017-04-01

Recent studies suggest that proton pump inhibitors (PPIs) may increase the risk for listeriosis. We investigated a potential association in cases of nonpregnancy-associated listeriosis using registry data. We conducted a population-based, case-control study using Danish health registries. Cases (n = 721) were defined as patients aged ≥45 years notified with listeriosis from July 1994 to December 2012. We selected 34800 controls using risk-set sampling. Controls were individually matched for age, sex, and municipality. Data on use of PPIs and other drugs and hospitalization diagnoses over a 5-year period were extracted from nationwide health registries. A comorbidity index (CMI) was constructed. We calculated the association between use of PPIs and related drugs within 30 days (current use) and other time windows before the index date. Using conditional logistic regression, matched odds ratios (ORs) adjusted for CMI and confounders were estimated. The adjusted OR for current use of PPIs and development of listeriosis was 2.81 (95% confidence interval [CI], 2.14-3.69). PPI usage up to 90 days before the index date remained statistically significant. Subgroup analyses revealed increasing ORs with decreasing age and level of comorbidity and an increased OR for concurrent glucocorticoid treatment (OR, 4.61; 95% CI, 3.01-7.06). No significant association was found for current use of histamine-2-receptor antagonists (adjusted OR, 1.82; 95% CI, 0.89-3.71). Prescribed PPIs were associated with increased risk of listeriosis. The risk waned with time since last prescription redemption. PPIs may have unwanted side effects in vulnerable populations. © The Author 2016. Published by Oxford University Press for the Infectious Diseases Society of America. All rights reserved. For permissions, e-mail: journals.permissions@oup.com.

Risk of malignancy with systemic psoriasis treatment in the Psoriasis Longitudinal Assessment Registry.

PubMed

Fiorentino, David; Ho, Vincent; Lebwohl, Mark G; Leite, Luiz; Hopkins, Lori; Galindo, Claudia; Goyal, Kavitha; Langholff, Wayne; Fakharzadeh, Steven; Srivastava, Bhaskar; Langley, Richard G

2017-11-01

The effect of systemic therapy on malignancy risk among patients with psoriasis is not fully understood. Evaluate the impact of systemic treatment on malignancy risk among patients with psoriasis in the Psoriasis Longitudinal Assessment and Registry (PSOLAR). Nested case-control analyses were performed among patients with no history of malignancy. Cases were defined as first malignancy (other than nonmelanoma skin cancer) in the Psoriasis Longitudinal Assessment and Registry, and controls were matched by age, sex, geographic region, and time on registry. Study therapies included methotrexate, ustekinumab, and tumor necrosis factor-α (TNF-α) inhibitors. Exposure was defined as 1 or more doses of study therapy within 12 months of malignancy onset and further stratified by duration of therapy. Multivariate conditional logistic regression, adjusted for potential confounders, was used to estimate odds ratios of malignancies associated with therapy. Among 12,090 patients, 252 malignancy cases were identified and 1008 controls were matched. Treatment with methotrexate or ustekinumab for more than 0 months to less than 3 months, 3 months to less than 12 months, or 12 months or longer was not associated with increased malignancy risk versus no exposure. Longer-term (≥12 months) (odds ratio, 1.54; 95% confidence interval, 1.10-2.15; P = .01), but not shorter-term treatment, with a TNF-α inhibitor was associated with increased malignancy risk. Cases and controls could belong to 1 or more therapy categories. Long-term (≥12 months) treatment with a TNF-α inhibitor, but not methotrexate and ustekinumab, may increase risk for malignancy in patients with psoriasis. Copyright © 2017 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

Population-based Testing and Treatment Characteristics for Chronic Myelogenous Leukemia

PubMed Central

Styles, Timothy; Wu, Manxia; Wilson, Reda; Babcock, Frances; Butterworth, David; West, Dee W.; Richardson, Lisa C.

2017-01-01

Introduction National and International Hematology/Oncology Practice Guidelines recommend testing for the BCR-ABL mutation for definitive diagnosis of chronic myeloid leukemia (CML) to allow for appropriate treatment with a Tyrosine Kinase Inhibitor (TKI). The purpose of our study was to describe population-based testing and treatment practice characteristics for patients diagnosed with CML. Methods We analyzed cases of CML using 2011 data from 10 state registries which are part of the Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries. We describe completeness of testing for the BCR-ABL gene and availability of outpatient treatment with TKIs and associated characteristics. Results A total of 685 cases of CML were identified; 55% (374) had a documented BCR-ABL gene test with 96% (360) of these being positive for the BCR-ABL gene and the remaining 4% (14) either testing negative or had a missing result. Registries were able to identify the use of TKIs in 54% (369) of patients, though only 43% (296) had a corresponding BCR-ABL gene test documented. One state registry reported a significantly lower percentage of patients being tested for the BCR-ABL gene (25%) and receiving TKI treatment (21%). Limiting analysis to CML case reports from the remaining nine CER registries, 78% (305) patients had a documented BCR-ABL gene test and 79% (308) had documented treatment with a TKI. Receipt of testing or treatment for these nine states did not vary by sex, race, ethnicity, census tract poverty level, census tract urbanization, or insurance status; BCR-ABL testing varied by state of residence and BCR-ABL testing and TKI therapy occurred less often with increasing age (OR: 0.97, 95%CI: 0.95–0.99; OR: 0.97, 95%CI: 0.96–0.99 respectively). Conclusions Collection of detailed CML data vary significantly by states. A majority of the case patients had appropriate testing for the BCR-ABL gene and treatment with tyrosine kinase inhibitors. However, BCR-ABL testing and TKI treatment decreased with increasing age. Further research is needed to understand CML coding, testing, and treatment disparities. PMID:28121314

Tuberculosis screening among homeless persons with AIDS living in single-room-occupancy hotels.

PubMed

Layton, M C; Cantwell, M F; Dorsinville, G J; Valway, S E; Onorato, I M; Frieden, T R

1995-11-01

Congregate facilities for homeless persons with the acquired immunodeficiency syndrome (AIDS) are often endemic for tuberculosis. We evaluated tuberculosis screening methods at single-room-occupancy hotels housing persons with AIDS. Residents were screened by cross matching the New York City Tuberculosis Registry, interviewing for tuberculosis history, skin testing, and chest radiography. Cases were classified as either previously or newly diagnosed. Among the 106 participants, 16 (15%) previously diagnosed tuberculosis cases were identified. Participants' tuberculosis histories were identified by the questionnaire (100%) or by registry match (69%). Eight participants (50%) were noncompliant with therapy. These findings prompted the establishment of a directly observed therapy program on site.

Parental Occupational Exposure to Heavy Metals and Welding Fumes and Risk of Testicular Germ Cell Tumors in Offspring: A Registry-Based Case-Control Study.

PubMed

Togawa, Kayo; Le Cornet, Charlotte; Feychting, Maria; Tynes, Tore; Pukkala, Eero; Hansen, Johnni; Olsson, Ann; Oksbjerg Dalton, Susanne; Nordby, Karl-Christian; Uuksulainen, Sanni; Wiebert, Pernilla; Woldbæk, Torill; Skakkebæk, Niels E; Fervers, Béatrice; Schüz, Joachim

2016-10-01

Data are scarce on the association between prenatal/preconception environmental exposure and testicular germ cell tumor (TGCT) in offspring. We examined parental occupational exposures to heavy metals and welding fumes in relation to TGCT in offspring in a registry-based case-control study (NORD-TEST Study). We identified TGCT cases diagnosed at ages 14-49 years in Finland (1988-2012), Norway (1978-2010), and Sweden (1979-2011) through nationwide cancer registries. These cases were individually matched by country and year of birth to controls selected from population registries. Information on parental occupations was retrieved from censuses. From this, we estimated prenatal/preconception exposures of chromium, iron, nickel, lead, and welding fumes (all three countries), and cadmium (Finland only) for each parent using job-exposure matrices specifying prevalence (P) and mean exposure level (L). Exposure indices were calculated as a product of P and L (P × L), and exposure categories were based on P × L or different combinations of P and L. The study comprised 8,112 cases and 26,264 controls. We observed no statistically significant TGCT risk associated with presence of heavy metals/welding fumes (P × L > 0) and no dose-response relationship (P trend ≥ 0.32). A statistically significant elevated TGCT risk was found in paternal exposure category where both P and L of chromium were high (vs. no chromium; OR = 1.37, 95% confidence interval; 1.05-1.79). Our study provides little evidence of associations between parental exposures to heavy metals/welding fumes and TGCT in offspring with the potential exception of high paternal chromium exposure. Further research on paternal chromium exposure is warranted. Cancer Epidemiol Biomarkers Prev; 25(10); 1426-34. ©2016 AACR. ©2016 American Association for Cancer Research.

Open and endovascular aneurysm repair in the Society for Vascular Surgery Vascular Quality Initiative.

PubMed

Spangler, Emily L; Beck, Adam W

2017-12-01

The Society for Vascular Surgery Vascular Quality Initiative is a patient safety organization and a collection of procedure-based registries that can be utilized for quality improvement initiatives and clinical outcomes research. The Vascular Quality Initiative consists of voluntary participation by centers to collect data prospectively on all consecutive cases within specific registries which physicians and centers elect to participate. The data capture extends from preoperative demographics and risk factors (including indications for operation), through the perioperative period, to outcomes data at up to 1-year of follow-up. Additionally, longer-term follow-up can be achieved by matching with Medicare claims data, providing long-term longitudinal follow-up for a majority of patients within the Vascular Quality Initiative registries. We present the unique characteristics of the Vascular Quality Initiative registries and highlight important insights gained specific to open and endovascular abdominal aortic aneurysm repair. Copyright © 2017 Elsevier Inc. All rights reserved.

Sarcoidosis diagnosed after September 11, 2001, among adults exposed to the World Trade Center disaster.

PubMed

Jordan, Hannah T; Stellman, Steven D; Prezant, David; Teirstein, Alvin; Osahan, Sukhminder S; Cone, James E

2011-09-01

Explore relationships between World Trade Center (WTC) exposures and sarcoidosis. Sarcoidosis has been reported after exposure to the WTC disaster. We ascertained biopsy-proven post-9/11 sarcoidosis among WTC Health Registry enrollees. Cases diagnosed after Registry enrollment were included in a nested case-control study. Controls were matched to cases on age, sex, race or ethnicity, and eligibility group (eg, rescue or recovery worker). We identified 43 cases of post-9/11 sarcoidosis. Twenty-eight incident cases and 109 controls were included in the case-control analysis. Working on the WTC debris pile was associated with sarcoidosis (odds ratio 9.1, 95% confidence interval 1.1 to 74.0), but WTC dust cloud exposure was not (odds ratio 1.0, 95% confidence interval 0.4 to 2.8). Working on the WTC debris pile was associated with an elevated risk of post-9/11 sarcoidosis. Occupationally exposed workers may be at increased risk. (C)2011The American College of Occupational and Environmental Medicine

Characteristics of Cardiac Arrest Occurring in the Workplace: A Post Hoc Analysis of the Paris Area Fire Brigade Registry.

PubMed

Palaghita, Andreea; Jost, Daniel; Despreaux, Thomas; Bougouin, Wulfran; Beganton, Frankie; Loeb, Thomas; Tourtier, Jean Pierre; Descatha, Alexis

2016-08-01

The aim of this study was to describe the characteristics of out-of-hospital cardiac arrest (OHCA) in different workplaces, their management, and the survival rate. A post hoc analysis included all the OHCA cases that occurred at the workplace and were listed in the Fire Brigade of Paris database registry (2010 to 2014). Utstein-style variables, survival, and types of workplace were analyzed. The study included 298 OHCA cases, mostly young (44% between 18 and 50 years), male (86%), and nontraumatic (86%). Differences in the survival chain were found to be related to the types of work location: bystander cardiopulmonary resuscitation was performed in 0% to 55% of cases, and workplace-automated external defibrillators were used in 0% to 20% of cases. Long-term survival without major incapacity was 0% to 23%. The characteristics of OHCA differ as a function of the type of workplace.

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

PubMed Central

2013-01-01

Background Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition. Results We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals. Conclusions Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations. PMID:23915640

[Incidence and mortality of central nervous system tumors in France: trends over the period 1978-2000 and influence of registration practices on results].

PubMed

Ménégoz, F; Martin, E; Danzon, A; Mathieu-Daudé, H; Guizard, A-V; Macé-Lesec'h, J; Raverdy, N; Pasquier, B

2006-10-01

In France, cancer incidence figures are produced by cancer registries covering only 13.5% to 16% of the whole population of the country. Thus, to produce national figures, estimates have to be computed. Registration disparities between registries concerning tumors of the Central Nervous System (CNS) could have biased these estimates. National estimates are based on modelling of the incidence/mortality ratio. The most recent estimations for year 2000 were calculated by the French Cancer Registry Network (FRANCIM) and the department of biostatistics of Lyon University Hospital. Since benign tumors are not recorded in some cancer registries, a new estimate of the incidence of CNS tumors was produced by estimating the number of benign tumors in these registries. In 2000 in France, the number of estimated cases of CNS tumors was 2697 in men and 2602 in women, with incidence rates (World standard) of 7.4 and 6.4 per 100,000 respectively. The incidence increased between 1978 and 2000, on an average by 2.25% per year in men and 3.01% per year in women. However, these estimates do not provide a correct picture of CNS incidence. First of all, pathological diagnoses are not performed in 3.5%-27.5% of the patients with CNS tumors registered in French registries. Second, figures for benign tumors (mainly meningiomas) were provided by only two of nine cancer registries. If benign tumors had been registered by all cancer registries, computed incidence would have increased by 12% for men and 26% for women. Incidence of CNS tumors is increasing in France, as in many other countries. To improve comparability with other countries, French cancer registries should also collect data on benign tumors. The discrepancies observed between registries in the proportion of patients without information on histology show differences in diagnostic practices and should be the starting point for a survey on this topic.

National cancer incidence and mortality in China, 2012.

PubMed

Chen, Wanqing; Zheng, Rongshou; Zuo, Tingting; Zeng, Hongmei; Zhang, Siwei; He, Jie

2016-02-01

Population-based cancer registration data in 2012 from all available cancer registries were collected by the National Central Cancer Registry (NCCR). NCCR estimated the numbers of new cancer cases and cancer deaths in China with compiled cancer incidence and mortality rates. In 2015, there were 261 cancer registries submitted cancer incidence and deaths occurred in 2012. All the data were checked and evaluated based on the NCCR criteria of data quality. Qualified data from 193 registries were used for cancer statistics analysis as national estimation. The pooled data were stratified by area (urban/rural), gender, age group [0, 1-4, 5-9, 10-14, …, 85+] and cancer type. New cancer cases and deaths were estimated using age-specific rates and corresponding national population in 2012. The Chinese census data in 2000 and Segi's population were applied for age-standardized rates. All the rates were expressed per 100,000 person-year. Qualified 193 cancer registries (74 urban and 119 rural registries) covered 198,060,406 populations (100,450,109 in urban and 97,610,297 in rural areas). The percentage of cases morphologically verified (MV%) and death certificate-only cases (DCO%) were 69.13% and 2.38%, respectively, and the mortality to incidence rate ratio (M/I) was 0.62. A total of 3,586,200 new cancer cases and 2,186,600 cancer deaths were estimated in China in 2012. The incidence rate was 264.85/100,000 (289.30/100,000 in males, 239.15/100,000 in females), the age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 191.89/100,000 and 187.83/100,000 with the cumulative incidence rate (0-74 age years old) of 21.82%. The cancer incidence, ASIRC and ASIRW in urban areas were 277.17/100,000, 195.56/100,000 and 190.88/100,000 compared to 251.20/100,000, 187.10/100,000 and 183.91/100,000 in rural areas, respectively. The cancer mortality was 161.49/100,000 (198.99/100,000 in males, 122.06/100,000 in females), the age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 112.34/100,000 and 111.25/100,000, and the cumulative mortality rate (0-74 years old) was 12.61%. The cancer mortality, ASMRC and ASMRW were 159.00/100,000, 107.231/100,000 and 106.13/100,000 in urban areas, 164.24/100,000, 118.22/100,000 and 117.06/100,000 in rural areas, respectively. Cancers of lung, stomach, liver, colorectum, esophagus, female breast, thyroid cervix, brain tumor and pancreas were the most common cancers, accounting for about 77.4% of all cancer new cases. Lung cancer, liver cancer, stomach cancer, esophageal cancer, colorectal cancer, pancreatic cancer, female breast cancer, brain tumor, leukemia and lymphoma were the leading causes of cancer death, accounting for about 84.5% of all cancer deaths. The cancer spectrum showed difference between urban and rural, males and females both in incidence and mortality rates. Cancer surveillance information in China is making great progress with the increasing number of cancer registries, population coverage and the improving data quality. Cancer registration plays a fundamental role in cancer control by providing basic information on population-based cancer incidence, mortality, survival and time trend. The disease burden of cancer is serious in China, so that, cancer prevention and control, including health education, health promotion, cancer screening and cancer care services in China, should be enhanced.

A global patient outcomes registry: Cochlear paediatric implanted recipient observational study (Cochlear(™) P-IROS).

PubMed

Sanderson, Georgina; Ariyaratne, Thathya V; Wyss, Josephine; Looi, Valerie

2014-01-01

Currently, there is a paucity of data concerning the long-term outcomes, educational placement and quality of life of children implanted with hearing devices from large and representative samples of the population. To address this concern, a large, prospective, multicentre, multinational patient-outcomes registry for paediatric recipients of implantable hearing devices was developed. The benefits of this registry, its approach and methodology are described. The Cochlear(™) Paediatric Implanted Recipient Observational Study (Cochlear P-IROS) is a prospective international patient-outcomes registry for children who are implanted in routine clinical practice with one or more hearing devices. The study aims to collect data on patient comorbidities, device use, auditory performance, quality of life and health-related utilities, across different types of implantable hearing devices from a range of manufacturers. Patients will be evaluated with a set of standardised and non-standardised questionnaires prior to initial device activation (baseline) and at six-monthly follow-up intervals up to 24 months and annually thereafter. The Cochlear P-IROS utilises a secure web interface to administer electronic case report forms to clinicians and families of implanted children. The web interface is currently available in five languages: English, Japanese, Korean, Mandarin and Russian. The interface also provides printable versions of the case report forms translated into 22 local languages for collection of data prior to entry online; additional languages may be added, as required. Participation in the Cochlear P-IROS registry is investigator-driven and voluntary. To date, the Cochlear P-IROS has recruited implant clinics across Australia, China, India, Indonesia, Turkey and Vietnam. The registry also aims to recruit multiple clinics in Cuba, Israel, Japan, Malaysia, Singapore, South Africa, South Korea and Russia. The use of a registry such as the Cochlear P-IROS will generate valuable data to support research interests of academics and clinicians around the globe. The data generated will be relevant for a wide range of stakeholders including regulators, payers, providers, policy makers, patients and their families, each with a different perspective for the acceptance and adoption of implantable hearing devices for the treatment of hearing loss.

A global patient outcomes registry: Cochlear paediatric implanted recipient observational study (Cochlear™ P-IROS)

PubMed Central

2014-01-01

Background Currently, there is a paucity of data concerning the long-term outcomes, educational placement and quality of life of children implanted with hearing devices from large and representative samples of the population. To address this concern, a large, prospective, multicentre, multinational patient-outcomes registry for paediatric recipients of implantable hearing devices was developed. The benefits of this registry, its approach and methodology are described. Methods/Design The Cochlear™ Paediatric Implanted Recipient Observational Study (Cochlear P-IROS) is a prospective international patient-outcomes registry for children who are implanted in routine clinical practice with one or more hearing devices. The study aims to collect data on patient comorbidities, device use, auditory performance, quality of life and health-related utilities, across different types of implantable hearing devices from a range of manufacturers. Patients will be evaluated with a set of standardised and non-standardised questionnaires prior to initial device activation (baseline) and at six-monthly follow-up intervals up to 24 months and annually thereafter. The Cochlear P-IROS utilises a secure web interface to administer electronic case report forms to clinicians and families of implanted children. The web interface is currently available in five languages: English, Japanese, Korean, Mandarin and Russian. The interface also provides printable versions of the case report forms translated into 22 local languages for collection of data prior to entry online; additional languages may be added, as required. Participation in the Cochlear P-IROS registry is investigator-driven and voluntary. To date, the Cochlear P-IROS has recruited implant clinics across Australia, China, India, Indonesia, Turkey and Vietnam. The registry also aims to recruit multiple clinics in Cuba, Israel, Japan, Malaysia, Singapore, South Africa, South Korea and Russia. Discussion The use of a registry such as the Cochlear P-IROS will generate valuable data to support research interests of academics and clinicians around the globe. The data generated will be relevant for a wide range of stakeholders including regulators, payers, providers, policy makers, patients and their families, each with a different perspective for the acceptance and adoption of implantable hearing devices for the treatment of hearing loss. PMID:25317075

Cancer survival among children of Turkish descent in Germany 1980–2005: a registry-based analysis

PubMed Central

Spix, Claudia; Spallek, Jacob; Kaatsch, Peter; Razum, Oliver; Zeeb, Hajo

2008-01-01

Background Little is known about the effect of migrant status on childhood cancer survival. We studied cancer survival among children of Turkish descent in the German Cancer Childhood Registry, one of the largest childhood cancer registries worldwide. Methods We identified children of Turkish descent among cancer cases using a name-based approach. We compared 5-year survival probabilities of Turkish and other children in three time periods of diagnosis (1980–87, 1988–95, 1996–2005) using the Kaplan-Meier method and log-rank tests. Results The 5-year survival probability for all cancers among 1774 cases of Turkish descent (4.76% of all 37.259 cases) was 76.9% compared to 77.6% in the comparison group (all other cases; p = 0.15). We found no age- or sex-specific survival differences (p-values between p = 0.18 and p = 0.90). For the period 1980–87, the 5-year survival probability among Turkish children with lymphoid leukaemia was significantly lower (62% versus 75.8%; p < 0.0001), this remains unexplained. For more recently diagnosed leukaemias, we saw no survival differences for Turkish and non-Turkish children. Conclusion Our results suggest that nowadays Turkish migrant status has no bearing on the outcome of childhood cancer therapies in Germany. The inclusion of currently more than 95% of all childhood cancer cases in standardised treatment protocols is likely to contribute to this finding. PMID:19040749

[Chronic obstructive pulmonary disease prevalence estimated using a standard algorithm based on electronic health data in various areas of Italy].

PubMed

Faustini, Annunziata; Cascini, Silvia; Arcà, Massimo; Balzi, Daniela; Barchielli, Alessandro; Canova, Cristina; Galassi, Claudia; Migliore, Enrica; Minerba, Sante; Protti, Maria Angela; Romanelli, Anna; Tessari, Roberta; Vigotti, Maria Angela; Simonato, Lorenzo

2008-01-01

to estimate the prevalence of chronic obstructive pulmonary disease (COPD) by integrating various administrative health information systems. prevalent COPD cases were defined as those reported in the hospital discharge registry (HDR) and cause of mortality registry (CMR) with codes 490*, 491*, 492*, 494* and 496* of the International diseases classification 9th revision. Annual prevalence was estimated in 35+ year-old residents in six Italian areas ofb different sizes, in the period 2002-2004. We included cases observed in the previous four years who were alive at the beginning of each year. in 2003, age-standardized prevalence rates varied from 1.6% in Venice to 5% in Taranto. Prevalence was higher in males and increased with age. The highest rates were observed in central (Rome) and southern (Taranto) cities, especially in the 35-64 age group. HDR contributed 91% of cases. Health-tax exemption registry would increase the prevalence estimate by 0.2% if used as a third data source. with respect to the National Health Status survey, COPD prevalence is underestimated by 1%-3%; this can partly be due to the selection of severe and exacerbated COPD by the algorithm used. However, age, gender and geographical characteristics of prevalent cases were comparable to national estimates. Including cases observed in previous years (longitudinal estimates) increased the point estimate (yearly) of prevalence two or three times in each area.

The Parkinsons Registry Investigation of Diagnosis and Etiology (PRIDE) Study

DTIC Science & Technology

2016-04-01

Committee for the Protection of Human Subjects (CPHS) through the State of California Health and Human Services Agency on 20-June-2011 as a minimal... pesticides , solvents or traumatic brain injury increase PD risk. This study takes advantage of the population-based PD registry in Santa Clara County...related morbidity and mortality are greater in persons exposed to pesticides , solvents, PCBs, and air pollutants. In addition, we will conduct a case

Editor's Choice - Prolonged ICU Length of Stay after AAA Repair: Analysis of Time Trends and Long-term Outcome.

PubMed

Gavali, H; Mani, K; Tegler, G; Kawati, R; Covaciu, L; Wanhainen, A

2017-08-01

The aim of the study was to investigate the frequency and outcome of prolonged intensive care unit (ICU) length of stay (LOS) after abdominal aortic aneurysm (AAA) repair in the endovascular era. All patients operated on for AAA between 1999 and 2013 at Uppsala University hospital were identified. Data were retrieved from the Swedish Vascular registry, the Swedish Intensive Care registry, the National Population registry, and case records. Prolonged ICU LOS was defined as ≥ 48 h during the primary hospital stay. Patients surviving ≥ 48 h after AAA surgery were included in the analysis. A total of 725 patients were identified, of whom 707 (97.5%) survived ≥ 48 h; 563 (79.6%) underwent intact AAA repair and 144 (20.4%) ruptured AAA repair. A total of 548 patients (77.5%) required < 48 h of intensive care, 115 (16.3%) 2-6 days and 44 (6.2%) ≥ 7 days. The rate of prolonged ICU LOS declined considerably over time, from 41.4% of all AAA repairs in 1999 to 7.3% in 2013 (p < .001) whereas the use of endovascular aortic repair (EVAR) increased from 6.9% in 1999 to 78.0% in 2013 (p < .001). The 30 day survival rate was 98.2% for those with < 48 h ICU stay versus 93.0% for 2-6 days versus 81.8% for ≥ 7 days (p < .001); the corresponding 90 day survival was 97.1% versus 86.1% versus 63.6% (p < .001) respectively. For patients surviving 90 days after repair, there was no difference in long-term survival between the groups. During the period of progressively increasing use of EVAR, a simultaneous significant reduction in frequency of prolonged ICU LOS occurred. Although prolonged ICU LOS was associated with a high short-term mortality, long-term outcome among those surviving the initial 90 days was less affected. Copyright © 2017 European Society for Vascular Surgery. Published by Elsevier Ltd. All rights reserved.

The spectrum of glomerulonephritis in saudi arabia: the results of the saudi registry.

PubMed

Huraib, S; Al Khader, A; Shaheen, F A; Abu Aisha, H; Souqiyyeh, M Z; Al Mohana, F; Soliman, M; Al Wakeel, J; Mitwalli, A; Al Mohaya, S; Said, R; Al Menawy, L; Sohaibani, M; Chan, N

2000-01-01

Only few studies regarding glomerulonephritis, with relatively small numbers of patients, have so far been published from different centers in Saudi Arabia, and have reported conflicting results regarding the patterns, even in the same city. The possible reasons for these differences include the small number of patients in the different studies, differences in the indications for renal biopsies, referral bias, geographical differences, and, sometimes, the non-availability of the necessary diagnostic facilities in the reporting centers. In order to overcome these problems, a registry for glomerulonephropathy was attempted in Saudi Arabia. Six large referral hospitals from different regions of Saudi Arabia participated in this registry. Biopsy reports and clinical information of 1294 renal biopsies were obtained. There were 782 renal biopsies due to glomerulonephritis (GN) accounting for 77.2% of the total biopsies. Five hundred eighty seven (72.6%) were primary glomerulonephritidis. Focal and segmental glomerulosclerosis (FSGS) (21.3%) and membrano-proliferative glomerulonephritis (MPGN) (20.7%) were the most common types found in the primary glomerulonephritidis. Membranous glomerulonephritis (MGN) was present in only 10.6% of the cases. IgA nephropathy was found in 6.5% of the cases. Of the secondary glomerulo-nephritides, systemic lupus erythematosus (SLE) was the most common indication for biopsy (57.0%) and amyloidosis was found in only 3.2% of the biopsies. In conclusion, FSGS and MPGN were the most common forms of primary glomerulonephritis in adult patients in Saudi Arabia. MGN was not as common as in the western world. SLE was the commonest cause of secondary GN. Amyloidosis was not as common as in other Arab countries. There is a need for more centers from Saudi Arabia to join this national GN registry. Similar registries can be established in different Arab countries, which all would, hopefully, lead to a Pan-Arab GN registry.

Missing data in trauma registries: A systematic review.

PubMed

Shivasabesan, Gowri; Mitra, Biswadev; O'Reilly, Gerard M

2018-03-30

Trauma registries play an integral role in trauma systems but their valid use hinges on data quality. The aim of this study was to determine, among contemporary publications using trauma registry data, the level of reporting of data completeness and the methods used to deal with missing data. A systematic review was conducted of all trauma registry-based manuscripts published from 01 January 2015 to current date (17 March 2017). Studies were identified by searching MEDLINE, EMBASE, and CINAHL using relevant subject headings and keywords. Included manuscripts were evaluated based on previously published recommendations regarding the reporting and discussion of missing data. Manuscripts were graded on their degree of characterization of such observations. In addition, the methods used to manage missing data were examined. There were 539 manuscripts that met inclusion criteria. Among these, 208 (38.6%) manuscripts did not mention data completeness and 88 (16.3%) mentioned missing data but did not quantify the extent. Only a handful (n = 26; 4.8%) quantified the 'missingness' of all variables. Most articles (n = 477; 88.5%) contained no details such as a comparison between patient characteristics in cohorts with and without missing data. Of the 331 articles which made at least some mention of data completeness, the method of managing missing data was unknown in 34 (10.3%). When method(s) to handle missing data were identified, 234 (78.8%) manuscripts used complete case analysis only, 18 (6.1%) used multiple imputation only and 34 (11.4%) used a combination of these. Most manuscripts using trauma registry data did not quantify the extent of missing data for any variables and contained minimal discussion regarding missingness. Out of the studies which identified a method of managing missing data, most used complete case analysis, a method that may bias results. The lack of standardization in the reporting and management of missing data questions the validity of conclusions from research based on trauma registry data. Copyright © 2018 Elsevier Ltd. All rights reserved.

Cancer prevalence in Italian cancer registry areas: the ITAPREVAL study. ITAPREVAL Working Group.

PubMed

Micheli, A; Francisci, S; Krogh, V; Rossi, A G; Crosignani, P

1999-01-01

To present data on cancer prevalence for the areas covered by Italian cancer registries, by using a standardized set of data collection and elaboration criteria, and a single method of data analysis. Data on over 250,000 patients with cancer, diagnosed between 1978 and 1992, from 11 Italian cancer registries covering about 12% of the Italian population were collected, validated and analyzed according to the unified protocol of the ITAPREVAL project. The method implemented in the PREVAL computer program was used to provide prevalence estimates for the period covered by cancer registration. The total prevalence for each registry and for the pool of all registries was then estimated by correcting for incomplete observations due to the period in which the registration was not yet activated. All prevalence estimates were for 1992. Prevalence figures are presented by cancer site, age, sex, years from diagnosis and registry area. For all malignancies combined, total prevalence ranged from 1,350 per 100,000 inhabitants in Ragusa to 3,650 per 100,000 inhabitants in Romagna, the ratio between these two extremes being 2.7. For the pool of the areas covered by registration cancer prevalence was 3,100 per 100,000 females and 2,250 per 100,000 males. About a third of the total female cases and about half the male cases were diagnosed in the previous five years. Among those aged over 75 years, total prevalence was higher for males than for females: 11,300 versus 8,900 per 100,000 respectively. This is the first large-scale estimate of the burden of cancer in Italy. It is also one of the first studies in the world which was aimed to study cancer prevalence in detail. These data are necessary for predicting health service needs and help in the evaluation of differences in health service demand by sex, age and Italian regions.

M and S Resource Discovery and Access (Communication des ressources de M and S et acces a ces ressources)

DTIC Science & Technology

2016-12-01

the goal of refining the requirements and developing a specification for an operational use Metadata Registry (MDR). Simultaneously, the NATO...key role1. Specifically it is stated that: “M&S can be effectively used as a lead investment to enable the advancement and continuous evolution of...and properties that allow data to be quickly and easily understood and used in specific applications. Metadata, or data about data, is the

Tuberculosis screening among homeless persons with AIDS living in single-room-occupancy hotels.

PubMed Central

Layton, M C; Cantwell, M F; Dorsinville, G J; Valway, S E; Onorato, I M; Frieden, T R

1995-01-01

Congregate facilities for homeless persons with the acquired immunodeficiency syndrome (AIDS) are often endemic for tuberculosis. We evaluated tuberculosis screening methods at single-room-occupancy hotels housing persons with AIDS. Residents were screened by cross matching the New York City Tuberculosis Registry, interviewing for tuberculosis history, skin testing, and chest radiography. Cases were classified as either previously or newly diagnosed. Among the 106 participants, 16 (15%) previously diagnosed tuberculosis cases were identified. Participants' tuberculosis histories were identified by the questionnaire (100%) or by registry match (69%). Eight participants (50%) were noncompliant with therapy. These findings prompted the establishment of a directly observed therapy program on site. PMID:7485672

A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

PubMed Central

2014-01-01

Background Although rare diseases have become a major public health issue, there is a paucity of population-based data on rare diseases. The aim of this epidemiological study was to provide descriptive figures referring to a sizable group of unrelated rare diseases. Methods Data from the rare diseases registry established in the Veneto Region of north-east Italy (population 4,900,000), referring to the years from 2002 to 2012, were analyzed. The registry is based on a web-based system accessed by different users. Cases are enrolled by two different sources: clinicians working at Centers of expertise officially designated to diagnose and care patients with rare diseases and health professionals working in the local health districts. Deaths of patients are monitored by Death Registry. Results So far, 19,547 patients with rare diseases have been registered, and 23% of them are pediatric cases. The overall raw prevalence of the rare diseases monitored in the population under study is 33.09 per 10,000 inhabitants (95% CI 32.56-33.62), whilst the overall incidence is 3.85 per 10,000 inhabitants (95% CI 3.67-4.03). The most commonly-recorded diagnoses belong to the following nosological groups: congenital malformations (Prevalence: 5.45/10,000), hematological diseases (4.83/10,000), ocular disorders (4.47/10,000), diseases of the nervous system (3.51/10,000), and metabolic disorders (2,95/10,000). Most of the deaths in the study population occur among pediatric patients with congenital malformations, and among adult cases with neurological diseases. Rare diseases of the central nervous system carry the highest fatality rate (71.36/1,000). Rare diseases explain 4.2% of general population Years of Life Lost (YLLs), comparing to 1.2% attributable to infectious diseases and 2.6% to diabetes mellitus. Conclusions Our estimates of the burden of rare diseases at population level confirm that these conditions are a relevant public health issue. Our snapshot of their epidemiology is important for public health planning purposes, going to show that population-based registries are useful tools for generating health indicators relating to a considerable number of rare diseases, rather than to specific conditions. PMID:24646171

[EPIDEMIOLOGY OF SUDDEN CARDIAC DEATH: DATA FROM THE PARIS SUDDEN DEATH EXPERTISE CENTER REGISTRY].

PubMed

Jouven, Xavier; Bougouin, Wulfran; Karam, Nicole; Marijon, Eloi

2015-09-01

Sudden cardiac death is an unexpected cardiac arrest without obvious extra-cardiac cause. Epidemiology of sudden cardiac death has been poorly documented in France, mainly because of challenging requirement in order to capture all cases in a specific area. The Parisian registry (Sudden Death Expertise Center, European Georges Pompidou Hospital, Paris) was initiated in May 2011 and analyzed data of all sudden death in Paris and suburbs (6.6 millions inhabitants). Over 3 years, the annual incidence estimated to 50-70 per 100,000. Those occurred mainly in men (69%), with a mean age of 65 year, and at home (75%). The event was witnessed in 80% of cases, but bystander cardiopulmonary resuscitation was initiated in only half of cases. Initial cardiac rhythm was ventricular fibrillation in 25%. Survival to hospital discharge remains low (8%).

Establishment of the Fox Chase Network Breast Cancer Risk Registry

DTIC Science & Technology

1996-10-01

Neurofibromatosis, type I h) Non-insulin dependent diabetes i) Turner Syndrome j) Tay Sachs Disease k) Marfan Syndrome 1) Cancer (tricky!) 2. Human chromosomes are...gastrointestinal and genitourinary cancers (4). Altogether, over 12 genetic-cancer syndromes have been localized to a specific gene (5). Some families suffer...component of the rare help test the best ways to Risk Registry._5, cases of breast cancer tions are likely to result Li-Fraumeni syndrome , only and up to

California’s Parkinson’s Disease Registry Pilot Project - Coordination Center and Northern California Ascertainment

DTIC Science & Technology

2014-03-01

www.capdregistry.org) and email box were created and launched in March, 2008. Requests for information about the registry from patients, colleagues and...d. Review and determination of study diagnosis. For cases with multiple parkinsonism codes (i.e. diagnosed with more than one of 332.0, 333.0...individuals (10.7%) had ICD-9 codes for other forms of neurodegenerative parkinsonism . The remaining 2.1% were primarily drug- induced parkinsonism

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List.

PubMed

Clarke, Lisa C; Rull, Rudolph P; Ayanian, John Z; Boer, Robert; Deapen, Dennis; West, Dee W; Kahn, Katherine L

2016-01-01

Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden. To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting. Self-reported survey responses of 3954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium. Sensitivity, specificity, positive predictive value, and percent agreement. We used logistic regression to identify predictors of underreporting and overreporting of a race/ethnicity. Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for whites, blacks, and Asians, and specificity was high for all groups (86%-100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self-reported and registry-reported race/ethnicity was more likely for women, Latinos, and Asians. Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.

Epidemiology of Multiple Myeloma in the Czech Republic.

PubMed

Maluskova, D; Svobodová, I; Kucerova, M; Brozova, L; Muzik, J; Jarkovský, J; Hájek, R; Maisnar, V; Dusek, L

2017-01-01

Multiple myeloma (MM) is a cancer of plasma cells with an incidence of 4.8 cases per 100,000 population in the Czech Republic in 2014; the burden of MM in the Czech Republic is moderate when compared to other European countries. This work brings the latest information on MM epidemiology in the Czech population. The Czech National Cancer Registry is the basic source of data for the population-based evaluation of MM epidemiology. This database also makes it possible to assess patient survival and to predict probable short-term as well as long-term trends in the treatment burden of the entire population. According to the latest Czech National Cancer Registry data, there were 504 new cases of MM and 376 deaths from MM in 2014. Since 2004, there has been a 26.9% increase in MM incidence and an 8.3% increase in MM mortality. In 2014, there were 1,982 persons living with MM or a history of MM, corresponding to a 74.4% increase when compared to MM prevalence in 2004. The 5-year survival of patients treated in the period 2010-2014 was nearly 40%. The available data make it possible to analyse long-term trends in MM epidemiology and to predict the future treatment burden as well as treatment results.Key words: multiple myeloma - epidemiology - Czech National Cancer Registry - Registry of Monoclonal Gammopathies - Czech Republic.

Professional Practice and Innovation: Level of Agreement between Coding Sources of Percentage Total Body Surface Area Burnt (%TBSA).

PubMed

Watterson, Dina; Cleland, Heather; Picton, Natalie; Simpson, Pam M; Gabbe, Belinda J

2011-03-01

The percentage of total body surface area burnt (%TBSA) is a critical measure of burn injury severity and a key predictor of burn injury outcome. This study evaluated the level of agreement between four sources of %TBSA using 120 cases identified through the Victorian State Trauma Registry. Expert clinician, ICD-10-AM, Abbreviated Injury Scale, and burns registry coding were compared using measures of agreement. There was near-perfect agreement (weighted Kappa statistic 0.81-1) between all sources of data, suggesting that ICD-10-AM is a valid source of %TBSA and use of ICD-10-AM codes could reduce the resource used by trauma and burns registries capturing this information.

Perioperative Mortality, 2010 to 2014: A Retrospective Cohort Study Using the National Anesthesia Clinical Outcomes Registry.

PubMed

Whitlock, Elizabeth L; Feiner, John R; Chen, Lee-Lynn

2015-12-01

The National Anesthesia Clinical Outcomes Registry collects demographic and outcome data from anesthesia cases, with the goal of improving safety and quality across the specialty. The authors present a preliminary analysis of the National Anesthesia Clinical Outcomes Registry database focusing on the rates of and associations with perioperative mortality (within 48 h of anesthesia induction). The authors retrospectively analyzed 2,948,842 cases performed between January 1, 2010, and May 31, 2014. Cases without procedure information and vaginal deliveries were excluded. Mortality and other outcomes were reported by the anesthesia provider. Hierarchical logistic regression was performed on cases with complete information for patient age group, sex, American Society of Anesthesiologists physical status, emergency case status, time of day, and surgery type, controlling for random effects within anesthesia practices. The final analysis included 2,866,141 cases and 944 deaths (crude mortality rate, 33 per 100,000). Increasing American Society of Anesthesiologists physical status, emergency case status, cases beginning between 4:00 PM and 6:59 AM, and patient age less than 1 yr or greater than or equal to 65 yr were independently associated with higher perioperative mortality. A post hoc subgroup analysis of 279,154 patients limited to 22 elective case types, post hoc models incorporating either more granular estimate of surgical risk or work relative value units, and a post hoc propensity score-matched cohort confirmed the association with time of day. Several factors were associated with increased perioperative mortality. A case start time after 4:00 PM was associated with an adjusted odds ratio of 1.64 (95% CI, 1.22 to 2.21) for perioperative death, which suggests a potentially modifiable target for perioperative risk reduction. Limitations of this study include nonstandardized mortality reporting and limited ability to adjust for missing data.

Uganda experience-Using cost assessment of an established registry to project resources required to expand cancer registration.

PubMed

Wabinga, Henry; Subramanian, Sujha; Nambooze, Sarah; Amulen, Phoebe Mary; Edwards, Patrick; Joseph, Rachael; Ogwang, Martin; Okongo, Francis; Parkin, D Maxwell; Tangka, Florence

2016-12-01

The objectives of this study are (1) to estimate the cost of operating the Kampala Cancer Registry (KCR) and (2) to use cost data from the KCR to project the resource needs and cost of expanding and sustaining cancer registration in Uganda, focusing on the recently established Gulu Cancer Registry (GCR) in rural Northern Uganda. We used Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to estimate the KCR's activity-based cost for 2014. We grouped the registry activities into fixed cost, variable core cost, and variable other cost activities. After a comparison KCR and GCR characteristics, we used the cost of the KCR to project the likely ongoing costs for the new GCR. The KCR incurred 42% of its expenditures in fixed cost activities, 40% for variable core cost activities, and the remaining 18% for variable other cost activities. The total cost per case registered was 28,201 Ugandan shillings (approximately US $10 in 2014) to collect and report cases using a combination of passive and active cancer data collection approaches. The GCR performs only active data collection, and covers a much larger area, but serves a smaller population compared to the KCR. After identifying many differences between KCR and GCR that could potentially affect the cost of registration, our best estimate is that the GCR, though newer and in a rural area, should require fewer resources than the KCR to sustain operations as a stand-alone entity. The optimal structure of the GCR needs to be determined in the future. Copyright © 2016 Elsevier Ltd. All rights reserved.

Patient-reported outcome measures in arthroplasty registries

PubMed Central

Bohm, Eric; Franklin, Patricia; Lyman, Stephen; Denissen, Geke; Dawson, Jill; Dunn, Jennifer; Eresian Chenok, Kate; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Lübbeke, Anne

2016-01-01

Abstract — The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain question (“During the past 4 weeks, how would you describe the pain you usually have in your [right/left] [hip/knee]?”; response: none, very mild, mild, moderate, or severe) and a single-item satisfaction outcome (“How satisfied are you with your [right/left] [hip/knee] replacement?”; response: very unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals, frequency of response, missing values, and factors in establishing a PROMs registry program. The Working Group recommends including age, sex, diagnosis at joint, general health status preoperatively, and joint pain and function score in case-mix adjustment models. Interpretation and statistical analysis should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before and 1 year after surgery, a threshold of 60% for acceptable frequency of response, documentation of non-responders, and documentation of incomplete or missing data. PMID:27228230

The Global Anticoagulant Registry in the FIELD-Atrial Fibrillation (GARFIELD-AF) : Exploring the changes in anticoagulant practice in patients with non-valvular atrial fibrillation in the Netherlands.

PubMed

Ten Cate, V; Ten Cate, H; Verheugt, F W A

2016-10-01

There are over 385,000 cases of atrial fibrillation (AF) in the Netherlands, with over 45,000 new cases each year. Among other things, AF patients are at high risk of stroke. Patients are often prescribed oral anticoagulation, such as vitamin K antagonists (VKA), to mitigate these risks. A recently introduced class of oral anticoagulants, non-vitamin K antagonists (NOAC), is quickly gaining currency in global clinical practice. This study provides insight into the changes these new drugs will bring about in Dutch clinical practice.GARFIELD-AF is a large-scale observational AF patient registry initiated in 2009 to track the evolution of global anticoagulation practice, and to study the impact of NOAC therapy in AF in particular. The registry includes a wide array of baseline characteristics and has a particular focus on: (1) bleeding and thromboembolic events; (2) international normalised ratio fluctuations; and (3) therapy compliance and persistence patterns. The results in this paper provide the baseline characteristics of the first cohorts of Dutch participants in this registry and discuss some of the consequences of the changes in anticoagulation practice.Although VKA therapy remains overwhelmingly favoured by Dutch practitioners, NOACs are clearly gaining in popularity. Between 2011 and 2014, NOACs constituted an increasingly large proportion of prescriptions for oral anticoagulants.The insights provided by the GARFIELD-AF registry can be used by healthcare systems to inform better budgetary strategies, by practitioners to better tailor treatment pathways to patients, and finally to promote awareness of the various available treatment options and their associated risks and benefits for patients.

Rationale and design of the extracranial carotid artery aneurysm registry.

PubMed

Welleweerd, J C; Bots, M L; Kappelle, L J; Rinkel, G J; Ruigrok, Y M; Baas, A F; van der Worp, H B; Vergouwen, M D; Bleys, R L; Hendrikse, J; Lo, T H; Moll, F L; de Borst, G J

2015-02-06

Aneurysms of the extracranial carotid artery (ECAA) are rare. Although most ECAA are identified in asymptomatic patients, serious neurological complications may occur. Current literature on treatment outcome contains mainly case reports and small case series with incomplete data and lack of long--term follow--up. There is clear lack on natural follow--up data, and there is no clear treatment algorithm. An international web--based registry to collect data on patients with ECAA is designed to provide clinical guidance on this scarce pathology. The Carotid Aneurysm Registry (CAR) is open for inclusion of all patients with a fusiform or saccular ECAA. Patients with primary or secondary ECAA can be enrolled in CAR independent of the type of treatment (conservative or invasive). CAR participation does not interfere with the local physician's treatment policy. Follow--up and imaging can also be scheduled according to local clinical practice. The primary endpoint of the CAR in conservative patients is occurrence of symptoms related to the aneurysm at 30 days, one, three, and five years. The primary endpoint in invasively treated patients is freedom from symptoms of the aneurysm at 30 days, one, three, and five years. Analyses will relate outcome to etiology, imaging characteristics, ECAA growth patterns, and (if applicable) revascularization technique applied. The aim of the registry is to prospectively collect follow--up data on patients with an ECAA, being either treated conservatively or by invasive aneurysm exclusion strategies. The CAR database will be used to address diagnostic and therapeutic research questions. Collecting and analyzing the data gained from the registry could be the first step towards development of treatment guidelines and expert consensus for the management of ECAA.

Epidemiology of neural tube defects in Saudi Arabia.

PubMed

AlShail, Essam; De Vol, Edward; Yassen, Ahsan; Elgamal, Essam A

2014-12-01

To evaluate the distribution and pattern of neural tube defects in Saudi Arabia by creating a hospital based registry. All cases registered in the King Faisal Specialist Hospital and Research Center (KFSH&RC) neural tube defect (NTD) registry since it was established in October 2000 until December 2012 were studied through active surveillance comprising a registrar who collects NTD information by reviewing the patient's medical records, and interviewing patient's families. The total number of patients registered from October 2000 to December 2012 was 718 patients. There were more females (417, 58%) than males (301, 42%). Of 620 mothers who underwent antenatal ultrasonography; 392 (63%) were diagnosed at birth, and 204 (33%) were diagnosed with antenatal hydrocephalus. In our registry sample, most mothers (95%) did not take folic acid 3 months prior to pregnancy, and 76% did not take folic acid during the 3 months after conception with the affected child. Only 5% received folic acid prior to conception. The KFSH&RC-NTD registry has met its objectives as a source of data that may significantly contribute to the prevention of NTDs, and improving quality of care for NTD patients through active publication of registry findings and management approaches.

Data Management and Site-Visit Monitoring of the Multi-Center Registry in the Korean Neonatal Network.

PubMed

Choi, Chang Won; Park, Moon Sung

2015-10-01

The Korean Neonatal Network (KNN), a nationwide prospective registry of very-low-birth-weight (VLBW, < 1,500 g at birth) infants, was launched in April 2013. Data management (DM) and site-visit monitoring (SVM) were crucial in ensuring the quality of the data collected from 55 participating hospitals across the country on 116 clinical variables. We describe the processes and results of DM and SVM performed during the establishment stage of the registry. The DM procedure included automated proof checks, electronic data validation, query creation, query resolution, and revalidation of the corrected data. SVM included SVM team organization, identification of unregistered cases, source document verification, and post-visit report production. By March 31, 2015, 4,063 VLBW infants were registered and 1,693 queries were produced. Of these, 1,629 queries were resolved and 64 queries remain unresolved. By November 28, 2014, 52 participating hospitals were visited, with 136 site-visits completed since April 2013. Each participating hospital was visited biannually. DM and SVM were performed to ensure the quality of the data collected for the KNN registry. Our experience with DM and SVM can be applied for similar multi-center registries with large numbers of participating centers.

Influence of morphology on survival for non-Hodgkin lymphoma in Europe and the United States.

PubMed

Sant, Milena; Allemani, Claudia; De Angelis, Roberta; Carbone, Antonino; de Sanjosè, Silvia; Gianni, Alessandro M; Giraldo, Pilar; Marchesi, Francesca; Marcos-Gragera, Rafael; Martos-Jiménez, Carmen; Maynadié, Marc; Raphael, Martine; Berrino, Franco

2008-03-01

We explored the influence of morphology on geographic differences in 5-year survival for non-Hodgkin lymphoma (NHL) diagnosed in 1990-1994 and followed for 5years: 16,955 cases from 27 EUROCARE-3 cancer registries, and 22,713 cases from 9 US SEER registries. Overall 5-year relative survival was 56.1% in EUROCARE west, 47.1% in EUROCARE east and 56.3% in SEER. Relative excess risk (RER) of death was 1.05 (95% confidence interval (CI) 1.01-1.10) in EUROCARE west, 1.52 (95% CI 1.44-1.60) in EUROCARE east (SEER reference). Excess risk of death was significantly above reference (diffuse B lymphoma) for Burkitt's and NOS lymphoma; not different for lymphoblastic and other T-cell; significantly below reference (in the order of decreasing relative excess risk) for NHL NOS, mantle cell/centrocytic, lymphoplasmacytic, follicular, small lymphocytic/chronic lymphocytic leukaemia, other specified NHL and cutaneous morphologies. Interpretation of marked variation in survival with morphology is complicated by classification inconsistencies. The completeness and standardisation of cancer registry morphology data needs to be improved.

Nuts and seed: a natural yet dangerous foreign body.

PubMed

Sih, Tania; Bunnag, Chaweewan; Ballali, Simonetta; Lauriello, Maria; Bellussi, Luisa

2012-05-14

This paper has the object to present the impact of nuts' and seeds' injuries withdrawing data from the Susy Safe registry, highlighting that as for other foreign bodies the main item efficiently and substantially susceptible to changes to decrease the accidents' rates is the education of adults and children, that can be shared with parents both from pediatricians and general practitioners. Indeed labeling and age related warnings have also a fundamental relevance in prevention. The present study draws its data from the Susy Safe registry. Details on injuries are entered in the Susy Safe Web-registry through a standardized case report form, that includes information regarding: children age and gender, features of the object, circumstances of injury (presence of parents and activity) and hospitalization's details (lasting, complications and removal details). Cases are prospectively collected using the Susy Safe system from 06/2005; moreover, also information regarding past consecutive cases available in each centre adhering to the project have been entered in the Susy Safe registry. Nuts and seeds are one of the most common food item retrieved in foreign bodies injuries in children. In Susy Safe registry they represent the 38% in food group, and almost the 10% in general cases. Trachea, bronchi and lungs were the main location of FB's retrieval, showing an incidence of 68%. Hospitalization occurred in 83% of cases, showing the major frequency for foreign bodies located in trachea. This location was also the principal site of complications, with a frequency of 68%. There were no significant associations between these outcomes and the age class of the children. The most common complications seen (22.4%) was bronchitis, followed by pneumonia (19.7%). Adult presence was recorded as positive in 71.2% of cases, showing an association (p value 0.009) between the adult supervision and the hospitalization outcome. On the contrary there was a non significant association between adult presence and the occurrence of complications. In 80.7% of cases, the incident happened while the child was eating. Among those cases, 88.6% interested trachea, lungs and bronchi. Food-related aspiration injuries are common events for young children, particularly under 4 years of age, and may lead to severe complication. There is a need to study in more depth specific characteristics of foreign bodies associated with increased hazard, such as size, shape, hardness or firmness, lubricity, pliability and elasticity, in order to better identify risky foods, and more precisely described the pathogenetic pathway. Parents are not adequately conscious and aware toward this risk; therefore, the number and severity of the injuries could be reduced by educating parents and children. Information about food safety should be included in all visits to pediatricians in order to make parents able to understand, select, and identify key characteristics of hazardous foods and better control the hazard level of various foods. Finally, preventive measures including warning labels on high-risk foods could be implemented. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

The German national registry for primary immunodeficiencies (PID)

PubMed Central

Gathmann, B; Goldacker, S; Klima, M; Belohradsky, B H; Notheis, G; Ehl, S; Ritterbusch, H; Baumann, U; Meyer-Bahlburg, A; Witte, T; Schmidt, R; Borte, M; Borte, S; Linde, R; Schubert, R; Bienemann, K; Laws, H-J; Dueckers, G; Roesler, J; Rothoeft, T; Krüger, R; Scharbatke, E C; Masjosthusmann, K; Wasmuth, J-C; Moser, O; Kaiser, P; Groß-Wieltsch, U; Classen, C F; Horneff, G; Reiser, V; Binder, N; El-Helou, S M; Klein, C; Grimbacher, B; Kindle, G

2013-01-01

In 2009, a federally funded clinical and research consortium (PID–NET, http://www.pid-net.org) established the first national registry for primary immunodeficiencies (PID) in Germany. The registry contains clinical and genetic information on PID patients and is set up within the framework of the existing European Database for Primary Immunodeficiencies, run by the European Society for Primary Immunodeficiencies. Following the example of other national registries, a central data entry clerk has been employed to support data entry at the participating centres. Regulations for ethics approvals have presented a major challenge for participation of individual centres and have led to a delay in data entry in some cases. Data on 630 patients, entered into the European registry between 2004 and 2009, were incorporated into the national registry. From April 2009 to March 2012, the number of contributing centres increased from seven to 21 and 738 additional patients were reported, leading to a total number of 1368 patients, of whom 1232 were alive. The age distribution of living patients differs significantly by gender, with twice as many males than females among children, but 15% more women than men in the age group 30 years and older. The diagnostic delay between onset of symptoms and diagnosis has decreased for some PID over the past 20 years, but remains particularly high at a median of 4 years in common variable immunodeficiency (CVID), the most prevalent PID. PMID:23607573

Project VALOR: design and methods of a longitudinal registry of post-traumatic stress disorder (PTSD) in combat-exposed veterans in the Afghanistan and Iraqi military theaters of operations.

PubMed

Rosen, Raymond C; Marx, Brian P; Maserejian, Nancy N; Holowka, Darren W; Gates, Margaret A; Sleeper, Lynn A; Vasterling, Jennifer J; Kang, Han K; Keane, Terence M

2012-03-01

Few studies have investigated the natural history of post-traumatic stress disorder (PTSD). Project VALOR (Veterans' After-discharge Longitudinal Registry) was designed as a longitudinal patient registry assessing the course of combat-related PTSD among 1600 male and female Veterans who served in Operation Enduring Freedom (OEF) in Afghanistan or Operation Iraqi Freedom (OIF). Aims of the study include investigating patterns and predictors of progression or remission of PTSD and treatment utilization. The study design was based on recommendations from the Agency for Healthcare Quality and Research for longitudinal disease registries and used a pre-specified theoretical model to select the measurement domains for data collection and interpretation of forthcoming results. The registry will include 1200 male and female Veterans with a recent diagnosis of PTSD in the Department of Veteran Affairs (VA) electronic medical record and a comparison group of 400 Veterans without a medical record-based PTSD diagnosis, to also allow for case-control analyses. Data are collected from administrative databases, electronic medical records, a self-administered questionnaire, and a semi-structured diagnostic telephone interview. Project VALOR is a unique and timely registry study that will evaluate the clinical course of PTSD, psychosocial correlates, and health outcomes in a carefully selected cohort of returning OEF/OIF Veterans. Copyright © 2011 John Wiley & Sons, Ltd.

Unequal care for dying patients in Sweden: a comparative registry study of deaths from heart disease and cancer.

PubMed

Brännström, Margareta; Hägglund, Lena; Fürst, Carl Johan; Boman, Kurt

2012-12-01

The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden. To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer. A retrospective registry study. Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients' symptoms and less often knew about where they wished to die. Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.

Construction and management of ARDS/sepsis registry with REDCap.

PubMed

Pang, Xiaoqing; Kozlowski, Natascha; Wu, Sulong; Jiang, Mei; Huang, Yongbo; Mao, Pu; Liu, Xiaoqing; He, Weiqun; Huang, Chaoyi; Li, Yimin; Zhang, Haibo

2014-09-01

The study aimed to construct and manage an acute respiratory distress syndrome (ARDS)/sepsis registry that can be used for data warehousing and clinical research. The workflow methodology and software solution of research electronic data capture (REDCap) was used to construct the ARDS/sepsis registry. Clinical data from ARDS and sepsis patients registered to the intensive care unit (ICU) of our hospital formed the registry. These data were converted to the electronic case report form (eCRF) format used in REDCap by trained medical staff. Data validation, quality control, and database management were conducted to ensure data integrity. The clinical data of 67 patients registered to the ICU between June 2013 and December 2013 were analyzed. Of the 67 patients, 45 (67.2%) were classified as sepsis, 14 (20.9%) as ARDS, and eight (11.9%) as sepsis-associated ARDS. The patients' information, comprising demographic characteristics, medical history, clinical interventions, daily assessment, clinical outcome, and follow-up data, was properly managed and safely stored in the ARDS/sepsis registry. Data efficiency was guaranteed by performing data collection and data entry twice weekly and every two weeks, respectively. The ARDS/sepsis database that we constructed and manage with REDCap in the ICU can provide a solid foundation for translational research on the clinical data of interest, and a model for development of other medical registries in the future.

Registry on acute cardiovascular events during endurance running races: the prospective RACE Paris registry.

PubMed

Gerardin, Benoît; Collet, Jean-Philippe; Mustafic, Hazrije; Bellemain-Appaix, Anne; Benamer, Hakim; Monsegu, Jacques; Teiger, Emmanuel; Livarek, Bernard; Jaffry, Murielle; Lamhaut, Lionel; Fleischel, Catherine; Aubry, Pierre

2016-08-21

Long distance running races are associated with a low risk of life-threatening events much often attributed to hypertrophic cardiomyopathy. However, retrospective analyses of aetiology lack consistency. Incidence and aetiology of life-threatening/fatal events were assessed in long distance races in the prospective Registre des Accidents Cardiaques lors des courses d'Endurance (RACE Paris Registry) from October 2006 to September 2012. Characteristics of life-threatening/fatal events were analysed by interviewing survivors and reviewing medical records including post-mortem data of each case. Seventeen life-threatening events were identified of 511 880 runners of which two were fatal. The vast majority were cardiovascular events (13/17) occurring in experienced male runners [mean (±SD) age 43 ± 10 years], with infrequent cardiovascular risk factors, atypical warning symptoms prior to the race or negative treadmill test when performed. Acute myocardial ischaemia was the predominant aetiology (8 of 13) and led to immediate myocardial revascularization. All cases with initial shockable rhythm survived. There was no difference in event rate according to marathons vs. half-marathons and events were clustered at the end of the race. A meta-analysis of all available studies including the RACE Paris registry (n = 6) demonstrated a low prevalence of life-threatening events (0.75/100 000) and that presentation with non-shockable rhythm [OR = 29.9; 95% CI (4.0-222.5), P = 0.001] or non-ischaemic aetiology [OR = 6.4; 95% CI (1.4-28.8), P = 0.015] were associated with case-fatality. Life-threatening/fatal events during long distance races are rare, most often unpredictable and mainly due to acute myocardial ischaemia. Presentation with non-shockable rhythm and non-ischaemic aetiology are the major determinant of case fatality. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2015. For permissions please email: journals.permissions@oup.com.

[Malignant mesothelioma in Emilia-Romagna: incidence and asbestos exposure].

PubMed

Mangone, Lucia; Romanelli, Antonio; Campari, Cinzia; Candela, Silvia

2002-01-01

This paper describes the activity, the sources of informations, methods and results of the "Emilia-Romagna Mesothelioma Registry" (ReM). The Registry started in 1996 and collects all cases of Malignant Mesothelioma (MM) occurring in Emilia-Romagna. 323 new cases (225 males and 98 females) have been detected during the period 1996-2001. Most cases (n = 286) concerned pleura. Other observed localizations were: peritoneum (n = 30), tunica vaginalis testis (n = 4) and pericardium (n = 3). Most of the cases were reported by the Institutes of Pathology and Occupational Health and by the Safety Services (respectively the 62% and the 18%). 87% of all the cases were histologically, 8% TC, 4% radiologically and only 1% clinically confirmed. The regional incidence rate (for 10(5) person-years, age standardized on the 1991 Italian population), has been estimated to be 1.98 in males and 0.88 in females. The highest rates were registered in Piacenza and Reggio Emilia province among men and Reggio Emilia and Ravenna province among women. 72% of cases have been classified as exposed to asbestos (64% occupationally and 8% as domestic/environmentally exposed).

Geospatial cryptography: enabling researchers to access private, spatially referenced, human subjects data for cancer control and prevention.

PubMed

Jacquez, Geoffrey M; Essex, Aleksander; Curtis, Andrew; Kohler, Betsy; Sherman, Recinda; Emam, Khaled El; Shi, Chen; Kaufmann, Andy; Beale, Linda; Cusick, Thomas; Goldberg, Daniel; Goovaerts, Pierre

2017-07-01

As the volume, accuracy and precision of digital geographic information have increased, concerns regarding individual privacy and confidentiality have come to the forefront. Not only do these challenge a basic tenet underlying the advancement of science by posing substantial obstacles to the sharing of data to validate research results, but they are obstacles to conducting certain research projects in the first place. Geospatial cryptography involves the specification, design, implementation and application of cryptographic techniques to address privacy, confidentiality and security concerns for geographically referenced data. This article defines geospatial cryptography and demonstrates its application in cancer control and surveillance. Four use cases are considered: (1) national-level de-duplication among state or province-based cancer registries; (2) sharing of confidential data across cancer registries to support case aggregation across administrative geographies; (3) secure data linkage; and (4) cancer cluster investigation and surveillance. A secure multi-party system for geospatial cryptography is developed. Solutions under geospatial cryptography are presented and computation time is calculated. As services provided by cancer registries to the research community, de-duplication, case aggregation across administrative geographies and secure data linkage are often time-consuming and in some instances precluded by confidentiality and security concerns. Geospatial cryptography provides secure solutions that hold significant promise for addressing these concerns and for accelerating the pace of research with human subjects data residing in our nation's cancer registries. Pursuit of the research directions posed herein conceivably would lead to a geospatially encrypted geographic information system (GEGIS) designed specifically to promote the sharing and spatial analysis of confidential data. Geospatial cryptography holds substantial promise for accelerating the pace of research with spatially referenced human subjects data.

Primary hyperoxaluria in populations of Pakistan origin: results from a literature review and two major registries.

PubMed

Talati, Jamsheer Jehangir; Hulton, Sally-Anne; Garrelfs, Sander F; Aziz, Wajahat; Rao, Shoaib; Memon, Amanullah; Nazir, Zafar; Biyabani, Raziuddin; Qazi, Saqib; Azam, Iqbal; Khan, Aysha Habib; Ahmed, Jamil; Jafri, Lena; Zeeshan, Mohammad

2018-04-01

Primary hyperoxalurias (PH) are devastating, autosomal recessive diseases causing renal stones. Undifferentiated hyperoxaluria is seen in up to 43% of Pakistani paediatric stone patients. High rates of consanguinity in Pakistan suggest significant local prevalence. There is no detailed information regarding number of cases, clinical features, and genetics in Pakistan-origin (P-o) patients. We reviewed available information on P-o PH patients recorded in the literature as well as from two major PH registries (the Rare Kidney Stone Consortium PH Registry (RKSCPHR) and the OxalEurope PH Registry (OxER); and the Aga Khan University Hospital in Pakistan. After excluding overlaps, we noted 217 P-o PH subjects (42 in OxER and 4 in RKSCPHR). Presentations were protean. Details of mutations were available for 94 patients of 201 who had genetic analyses. Unique mutations were noted. Mutation [c.508G>A (p. Gly170Arg)] (present in up to 25% in the West) was reported in only one case. In one series, only 30% had mutations on exons 1,4,7 of AGXT. Of 42 P-o patients in OxER, 52.4% were PH1, 45.2% PH2, and 2.4% PH3. Of concern is that diagnosis was made after renal transplant rejection (four cases) and on bone-marrow aspiration (in five). Lack of consideration of PH as a diagnosis, late diagnosis, and loss of transplanted kidneys mandates that PH be searched for diligently. Mutation analysis will need to extend to all exons and include PH 1,2,3. There is a need to spread awareness and identify patients through a scoring or screening system that alerts physicians to consider a diagnosis of PH.

Visual outcome of cataract surgery; study from the European Registry of Quality Outcomes for Cataract and Refractive Surgery.

PubMed

Lundström, Mats; Barry, Peter; Henry, Ype; Rosen, Paul; Stenevi, Ulf

2013-05-01

To analyze the visual outcome after cataract surgery. Cataract surgery clinics in 15 European countries. Database study. Data were drawn from case series of cataract extractions reported to the European Registry of Quality Outcomes for Cataract and Refractive Surgery database. These data were entered into the database via the Web by surgeons or by transfer from existing national registries or electronic medical record systems. The database contains individual anonymous data on preoperative, intraoperative, and postoperative measurements. Data on 368,256 cataract extractions were available for analysis. The best visual outcome was achieved in age groups 40 to 74 years, and men showed a higher percentage of excellent vision (1.0 [20/20] or better) than women. A corrected distance visual acuity (CDVA) of 0.5 (20/40) or better and of 1.0 (20/20) or better was achieved in 94.3% and 61.3% of cases, respectively. Ocular comorbidity and postoperative complications were the strongest influences on the visual outcome; however, surgical complications and ocular changes requiring complex surgery also had a negative influence. Deterioration of visual acuity after the surgery (n= 6112 [1.7% of all cases]) was most common in patients with a good preoperative visual acuity. The visual outcomes of cataract surgery were excellent, with 61.3% of patients achieving a corrected distance visual acuity of 1.0 (20/20) or better. Age and sex influenced the visual outcomes, but the greatest influences were short-term postoperative complications, ocular comorbidity, surgical complications, and complex surgery. A weakness of the study could be that some of the data is self-reported to the registry. Copyright © 2013 ASCRS and ESCRS. Published by Elsevier Inc. All rights reserved.

Targeted next-generation sequencing reveals MODY in up to 6.5% of antibody-negative diabetes cases listed in the Norwegian Childhood Diabetes Registry.

PubMed

Johansson, Bente B; Irgens, Henrik U; Molnes, Janne; Sztromwasser, Paweł; Aukrust, Ingvild; Juliusson, Petur B; Søvik, Oddmund; Levy, Shawn; Skrivarhaug, Torild; Joner, Geir; Molven, Anders; Johansson, Stefan; Njølstad, Pål R

2017-04-01

MODY can be wrongly diagnosed as type 1 diabetes in children. We aimed to find the prevalence of MODY in a nationwide population-based registry of childhood diabetes. Using next-generation sequencing, we screened the HNF1A, HNF4A, HNF1B, GCK and INS genes in all 469 children (12.1%) negative for both GAD and IA-2 autoantibodies and 469 antibody-positive matched controls selected from the Norwegian Childhood Diabetes Registry (3882 children). Variants were classified using clinical diagnostic criteria for pathogenicity ranging from class 1 (neutral) to class 5 (pathogenic). We identified 58 rare exonic and splice variants in cases and controls. Among antibody-negative patients, 6.5% had genetic variants of classes 3-5 (vs 2.4% in controls; p = 0.002). For the stricter classification (classes 4 and 5), the corresponding number was 4.1% (vs 0.2% in controls; p = 1.6 × 10 -5 ). HNF1A showed the strongest enrichment of class 3-5 variants, with 3.9% among antibody-negative patients (vs 0.4% in controls; p = 0.0002). Antibody-negative carriers of variants in class 3 had a similar phenotype to those carrying variants in classes 4 and 5. This is the first study screening for MODY in all antibody-negative children in a nationwide population-based registry. Our results suggest that the prevalence of MODY in antibody-negative childhood diabetes may reach 6.5%. One-third of these MODY cases had not been recognised by clinicians. Since a precise diagnosis is important for treatment and genetic counselling, molecular screening of all antibody-negative children should be considered in routine diagnostics.

Reliability of recording uterine cancer in death certification in France and age-specific proportions of deaths from cervix and corpus uteri.

PubMed

Rogel, Agnès; Belot, Aurélien; Suzan, Florence; Bossard, Nadine; Boussac, Marjorie; Arveux, Patrick; Buémi, Antoine; Colonna, Marc; Danzon, Arlette; Ganry, Olivier; Guizard, Anne-Valérie; Grosclaude, Pascale; Velten, Michel; Jougla, Eric; Iwaz, Jean; Estève, Jacques; Chérié-Challine, Laurence; Remontet, Laurent

2011-06-01

French uterine cancer recordings in death certificates include 60% of "uterine cancer, Not Otherwise Specified (NOS)"; this hampers the estimation of mortalities from cervix and corpus uteri cancers. The aims of this work were to study the reliability of uterine cancer recordings in death certificates using a case matching with cancer registries and estimate age-specific proportions of deaths from cervix and corpus uteri cancers among all uterine cancer deaths by a statistical approach that uses incidence and survival data. Deaths from uterine cancer between 1989 and 2001 were extracted from the French National database of causes of death and case-to-case matched to women diagnosed with uterine cancer between 1989 and 1997 in 8 cancer registries. Registry data were considered as "gold-standard". Among the 1825 matched deaths, cancer registries recorded 830 cervix and 995 corpus uteri cancers. In death certificates, 5% and 40% of "true" cervix cancers were respectively coded "corpus" and "uterus, NOS" and 5% and 59% of "true" corpus cancers respectively coded "cervix" and "uterus, NOS". Miscoding cervix cancers was more frequent at advanced ages at death and in deaths at home or in small urban areas. Miscoding corpus cancers was more frequent in deaths at home or in small urban areas. From the statistical method, the estimated proportion of deaths from cervix cancer among all uterine cancer deaths was higher than 95% in women aged 30-40 years old but declined to 35% in women older than 70 years. The study clarifies the reason for poor encoding of uterus cancer mortality and refines the estimation of mortalities from cervix and corpus uteri cancers allowing future studies on the efficacy of cervical cancer screening. Copyright © 2010 Elsevier Ltd. All rights reserved.

Can rheumatoid arthritis (RA) registries provide contextual safety data for modern RA clinical trials? The case for mortality and cardiovascular disease.

PubMed

Michaud, Kaleb; Berglind, Niklas; Franzén, Stefan; Frisell, Thomas; Garwood, Christopher; Greenberg, Jeffrey D; Ho, Meilien; Holmqvist, Marie; Horne, Laura; Inoue, Eisuke; Nyberg, Fredrik; Pappas, Dimitrios A; Reed, George; Symmons, Deborah; Tanaka, Eiichi; Tran, Trung N; Verstappen, Suzanne M M; Wesby-van Swaay, Eveline; Yamanaka, Hisashi; Askling, Johan

2016-10-01

We implemented a novel method for providing contextual adverse event rates for a randomised controlled trial (RCT) programme through coordinated analyses of five RA registries, focusing here on cardiovascular disease (CVD) and mortality. Each participating registry (Consortium of Rheumatology Researchers of North America (CORRONA) (USA), Swedish Rheumatology Quality of Care Register (SRR) (Sweden), Norfolk Arthritis Register (NOAR) (UK), CORRONA International (East Europe, Latin America, India) and Institute of Rheumatology, Rheumatoid Arthritis (IORRA) (Japan)) defined a main cohort from January 2000 onwards. To address comparability and potential bias, we harmonised event definitions and defined several subcohorts for sensitivity analyses based on disease activity, treatment, calendar time, duration of follow-up and RCT exclusions. Rates were standardised for age, sex and, in one sensitivity analysis, also HAQ. The combined registry cohorts included 57 251 patients with RA (234 089 person-years)-24.5% men, mean (SD) baseline age 58.2 (13.8) and RA duration 8.2 (11.7) years. Standardised registry mortality rates (per 100 person-years) varied from 0.42 (CORRONA) to 0.80 (NOAR), with 0.60 for RCT patients. Myocardial infarction and major adverse cardiovascular events (MACE) rates ranged from 0.09 and 0.31 (IORRA) to 0.39 and 0.77 (SRR), with RCT rates intermediate (0.18 and 0.42), respectively. Additional subcohort analyses showed small and mostly consistent changes across registries, retaining reasonable consistency in rates across the Western registries. Additional standardisation for HAQ returned higher mortality and MACE registry rates. This coordinated approach to contextualising RA RCT safety data demonstrated reasonable differences and consistency in rates for mortality and CVD across registries, and comparable RCT rates, and may serve as a model method to supplement clinical trial analyses for drug development programmes. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Pre-Vaccination Care-Seeking in Females Reporting Severe Adverse Reactions to HPV Vaccine. A Registry Based Case-Control Study.

PubMed

Mølbak, Kåre; Hansen, Niels Dalum; Valentiner-Branth, Palle

2016-01-01

Since 2013 the number of suspected adverse reactions to the quadrivalent human papillomavirus (HPV) vaccine reported to the Danish Medicines Agency (DMA) has increased. Due to the resulting public concerns about vaccine safety, the coverage of HPV vaccinations in the childhood vaccination programme has declined. The aim of the present study was to determine health care-seeking prior to the first HPV vaccination among females who suspected adverse reactions to HPV vaccine. In this registry-based case-control study, we included as cases vaccinated females with reports to the DMA of suspected severe adverse reactions. We selected controls without reports of adverse reactions from the Danish vaccination registry and matched by year of vaccination, age of vaccination, and municipality, and obtained from the Danish National Patient Registry and The National Health Insurance Service Register the history of health care usage two years prior to the first vaccine. We analysed the data by logistic regression while adjusting for the matching variables. The study included 316 cases who received first HPV vaccine between 2006 and 2014. Age range of cases was 11 to 52 years, with a peak at 12 years, corresponding to the recommended age at vaccination, and another peak at 19 to 28 years, corresponding to a catch-up programme targeting young women. Compared with 163,910 controls, cases had increased care-seeking in the two years before receiving the first HPV vaccine. A multivariable model showed higher use of telephone/email consultations (OR 1.9; 95% CI 1.2-3.2), physiotherapy (OR 2.1; 95% CI 1.6-2.8) and psychologist/psychiatrist (OR 1.9; 95% CI 1.3-2.7). Cases were more likely to have a diagnosis in the ICD-10 chapters of diseases of the digestive system (OR 1.6; 95% CI 1.0-2.4), of the musculoskeletal system (OR 1.6; 95% CI 1.1-2.2), symptoms or signs not classified elsewhere (OR 1.8; 95% CI 1.3-2.5) as well as injuries (OR 1.5; 95% CI 1.2-1.9). Before receiving the first HPV vaccination, females who suspected adverse reactions has symptoms and a health care-seeking pattern that is different from the matched population. Pre-vaccination morbidity should be taken into account in the evaluation of vaccine safety signals.

New drug information resources for pharmacists at the National Library of Medicine.

PubMed

Knoben, James E; Phillips, Steven J

2014-01-01

To provide an overview of selected drug information-related databases of the National Library of Medicine (NLM), with a focus on newer resources that support the professional information needs of pharmacists and other health care providers. NLM, which is the world's largest medical library, provides an array of bibliographic, factual, and evidence-based drug, herbal remedy, and dietary supplement information resources. Five of the more recently introduced online resources include areas of particular importance to pharmacists, including a repository of current product labeling/package inserts, with automated search links to associated information resources; a portal to drug information that allows pharmacists to search multiple databases simultaneously and link to related medication and health care information resources; authoritative information on the effects of medications, herbal remedies, and dietary supplements in nursing infants and their mothers; comprehensive information, including a case registry, on the potential for liver toxicity due to drugs, herbal remedies, and dietary supplements; and a pill identification system with two intuitive search methodologies. NLM provides several clinical-scientific drug information resources that are particularly useful in meeting the professional information needs of pharmacists.

Filing for workers' compensation among Ontario cases of mesothelioma.

PubMed

Payne, Jennifer Isabelle; Pichora, Erin

2009-01-01

For many types of cancer, disease attribution to occupational exposures is difficult. Mesothelioma, however, is a 'sentinel' occupational cancer associated with asbestos exposure. The present study linked workers' compensation claims data with cancer registry data to explore the completeness of reporting of mesothelioma to the Ontario Workplace Safety and Insurance Board (WSIB) according to characteristics of cases diagnosed among Ontario residents. Two data sources were linked at the person level: the WSIB Occupational Disease Information and Surveillance System and the Ontario Cancer Registry. Filing rates were calculated as the proportion of Ontario Cancer Registry mesothelioma cases (International Classification of Diseases - Oncology code 905) that linked to a WSIB-filed cancer claim. Filing rates were calculated for the period 1980 to 2002, and trends were calculated by year, age and county of residence at diagnosis. The filing rate for compensation has increased little over the past 20 years, reaching a high of 43% in 2000. Overall, filing rates were highest among pleural mesothelioma cases among men (range 27% to 57%). Filing rates were highest among individuals 50 to 59 years of age and declined substantially throughout the retirement years. There was substantial variation in filing rates by area of residence, with the highest rate being in Lambton County, Ontario. The filing rate for compensation in Ontario was much lower than the estimated proportion of cases eligible for compensation. The increased filing rate in Lambton County was likely related to this community's awareness of the association between asbestos and mesothelioma. Physicians can play an important role in educating patients of their potential entitlement to compensation benefits.

Cumulative exposure to biologics and risk of cancer in psoriasis patients: A meta-analysis of Psonet studies from Israel, Italy, Spain, United Kingdom and Republic of Ireland.

PubMed

Garcia-Doval, I; Descalzo, M A; Mason, K J; Cohen, A D; Ormerod, A D; Gómez-García, F J; Cazzaniga, S; Feldhamer, I; Ali, H; Herrera-Acosta, E; Griffiths, C E M; Stern, R; Naldi, L

2018-05-03

Cancer risk following long-term exposure to systemic immunomodulatory therapies in psoriasis patients is possible. To assess a dose-response relationship between cumulative length of exposure to biologic therapy and risk of cancer. Four national studies (a healthcare database from Israel, and prospective cohorts form Italy, Spain and UK/ROI) collaborating through Psonet (European Registry of Psoriasis) participated in these nested case-control studies, including nearly 60.000 person-years of observation. Cases were patients who developed an incident cancer. Patients with previous cancers and benign or in-situ tumours were excluded. Four cancer-free controls were matched to each case on year of birth, gender, geographic area, and registration year. Follow-up for controls was censored at the date of cancer diagnosis for the matched case. Conditional logistic regression was performed by each registry. Results were pooled using random effects meta-analysis. 728 cases and 2671 controls were identified. After matching, differences between cases and controls were present for the Charlson comorbidity index in all three registries, and in the prevalence of previous exposure to psoralen-ultraviolet-A (PUVA) and smoking (BADBIR only). The risk of first cancers was not significantly associated with cumulative exposure to biologics (adjusted odds ratio per year of exposure 1.02; 95%CI 0.92, 1.13). Results were similar if squamous and basal cell carcinomas were included in the outcome. Cumulative length of exposure to biologic therapies of psoriasis patients in real-world clinical practice does not appear to be linked to a higher risk of cancer after several years of use. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Trend of brain tumor incidence by histological subtypes in Japan: estimation from the Brain Tumor Registry of Japan, 1973-1993.

PubMed

Kaneko, Satoshi; Nomura, Kazuhiro; Yoshimura, Takesumi; Yamaguchi, Naohito

2002-10-01

In order to estimate the risk of primary brain tumor (PBT), we attempted to estimate the national incidence rates of PBT by histological subtypes using the Brain Tumor Registry of Japan (BTR). The number of deaths due to PBT in a certain year is the sum of the deaths among patients diagnosed in different years. Registered cases in the BTR represent incident cases of PBT in the whole country multiplied by a cover rate. The cover rate is defined as the proportions of PBT cases that the Registry counts in relation to all the cases in the country in a given year. If the survival experience among the registered cases represents the survival experience of all cases, then the rate of registered deaths represents all deaths due to PBT in Japan. By this logic, we estimated the cover rates and incidence rates from 1973 to 1993 using the BTR and National Vital Statistics data. Our estimates showed three patterns of time trends: (1) a gradual linear increasing trend before the 1980s followed by a plateau (total PBT, gliomas, meningioma, and hemangioblastoma), (2) a trend with a step-up increase in the 1980s followed by a plateau (germ cell tumor and pituitary tumor), and (3) a linear increasing trend throughout the observation period with no plateau (malignant lymphoma and neurinoma). Furthermore, obvious sex differences in time trends were observed in rates of meningioma, germ cell tumor, and pituitary tumor. The results of this study demonstrated several distinctive patterns in time trends, which give us insight into the possible etiologies of brain tumors. Further epidemiological study is needed to elucidate these findings.

[Report of Cancer Incidence and Mortality in China, 2014].

PubMed

Chen, W Q; Li, H; Sun, K X; Zheng, R S; Zhang, S W; Zeng, H M; Zou, X N; Gu, X Y; He, J

2018-01-23

Objective: The registration data of local cancer registries in 2014 were collected by National Central Cancer Registry (NCCR)in 2017 to estimate the cancer incidence and mortality in China. Methods: The data submitted from 449 registries were checked and evaluated, and the data of 339 registries out of them were qualified and selected for the final analysis. Cancer incidence and mortality were stratified by area, gender, age group and cancer type, and combined with the population data of 2014 to estimate cancer incidence and mortality in China. The age composition of standard population of Chinese census in 2000 and Segi's population were used for age-standardized incidence and mortality in China and worldwide, respectively. Results: Total covered population of 339 cancer registries (129 in urban and 210 in rural) in 2014 were 288 243 347 (144 061 915 in urban and 144 181 432 in rural areas). The mortality verified cases (MV%) were 68.01%. Among them, 2.19% cases were identified through death certifications only (DCO%), and the mortality to incidence ratio was 0.61. There were about 3, 804, 000 new cases diagnosed as malignant cancer and 2, 296, 000 cases dead in 2014 in the whole country. The incidence rate was 278.07/100, 000 (males 301.67/100, 000, females 253.29/100, 000) in China, age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population were 190.63/100, 000 and 186.53/100, 000, respectively, and the cumulative incidence rate (0-74 age years old) was 21.58%. The cancer incidence and ASIRC in urban areas were 302.13/100, 000 and 196.58/100, 000, respectively, whereas in rural areas, those were 248.94/100, 000 and 182.64/100, 000, respectively. The cancer mortality in China was 167.89/100, 000 (207.24/100, 000 in males and 126.54/100, 000 in females), age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population were 106.98/100, 000 and 106.09/100, 000, respectively. And the cumulative incidence rate (0-74 age years old) was 12.00%. The cancer mortality and ASMRC in urban areas were 174.34/100, 000 and 103.49/100, 000, respectively, whereas in rural areas, those were 160.07/100, 000 and 111.57/100, 000, respectively. Lung cancer, gastric cancer, colorectal cancer, liver cancer, female breast cancer, esophageal cancer, thyroid cancer, cervical cancer, encephala and pancreas cancer, were the most common cancers in China, accounting for about 77.00% of the new cancer cases. Lung cancer, liver cancer, gastric cancer, esophageal cancer, colorectal cancer, pancreatic cancer, breast cancer, encephala, leukemia and lymphoma were the leading causes of death and accounted for about 83.36% of cancer deaths. Conclusions: The progression of cancer registry in China develops rapidly in these years, with the coverage of registrations is expanded and the data quality was improved steadily year by year. As the basis of cancer prevention and control program, cancer registry plays an important role in making the medium and long term of anti-cancer strategies in China. As China is still facing the serious cancer burden and the cancer patterns varies differently according to the locations and genders, effective measures and strategies of cancer prevention and control should be implemented based on the practical situation.

Demographic and clinical data in acquired hemophilia A: results from the European Acquired Haemophilia Registry (EACH2).

PubMed

Knoebl, P; Marco, P; Baudo, F; Collins, P; Huth-Kühne, A; Nemes, L; Pellegrini, F; Tengborn, L; Lévesque, H

2012-04-01

Acquired hemophilia A (AHA) is a rare autoimmune disease caused by autoantibodies against coagulation factor VIII and characterized by spontaneous hemorrhage in patients with no previous family or personal history of bleeding. Although data on several AHA cohorts have been collected, limited information is available on the optimal management of AHA. The European Acquired Hemophilia Registry (EACH2) was established to generate a prospective, large-scale, pan-European database on demographics, diagnosis, underlying disorders, bleeding characteristics, treatment and outcome of AHA patients. Five hundred and one (266 male, 235 female) patients from 117 centers and 13 European countries were included in the registry between 2003 and 2008. In 467 cases, hemostasis investigations and AHA diagnosis were triggered by a bleeding event. At diagnosis, patients were a median of 73.9 years. AHA was idiopathic in 51.9%; malignancy or autoimmune diseases were associated with 11.8% and 11.6% of cases. Fifty-seven per cent of the non-pregnancy-related cases were male. Four hundred and seventy-four bleeding episodes were reported at presentation, and hemostatic therapy initiated in 70.5% of patients. Delayed diagnosis significantly impacted treatment initiation in 33.5%. Four hundred and seventy-seven patients underwent immunosuppression, and 72.6% achieved complete remission. Representing the largest collection of consecutive AHA cases to date, EACH2 facilitates the analysis of a variety of open questions in AHA. © 2012 International Society on Thrombosis and Haemostasis.

Silicosis surveillance in New Jersey: targeting workplaces using occupational disease and exposure surveillance data.

PubMed

Valiante, D J; Richards, T B; Kinsley, K B

1992-01-01

To identify workplaces in New Jersey with potential for silica exposure, the New Jersey Department of Health compared four-digit Standard Industrial Classifications (SICs) identified by three different data sources: the National Occupational Exposure Survey (NOES), a new Jersey silicosis case registry, and regulatory agency compliance inspections in New Jersey. In total, the three data sources identified 204 SICs in New Jersey with potential for silica exposure. Forty-five percent of these SICs were identified by NOES only, 16% by registry cases only, 6% by compliance inspections only, and 33% by two or more sources. Since different surveillance sources implicate different SICs, this type of analysis is a useful first step in planning programs for prevention of silicosis.

Elevated blood lead levels among adults in Massachusetts, 1991-1995.

PubMed

Tumpowsky, C M; Davis, L K; Rabin, R

2000-01-01

Lead poisoning, the oldest recognized occupational disease, remains a danger for children and adults. Data collected for 664 cases reported to the Massachusetts Occupational Lead Registry in 1991-1995 were summarized in a 1998 state report. Here, the authors present some of the key findings from that report for a wider audience. The authors summarize key findings of the 1998 state report. Construction workers, in particular licensed deleaders and house painters, accounted for almost 70% of occupational cases involving blood lead levels > or = 40 micrograms of lead per deciliter (mcg/dl) of blood. Among 100 workers with the highest blood lead levels (> or = 60 mcg/dl), 29% were house painters. Hispanic workers were over-represented in the Registry. A small proportion of cases were non-occupational, typically associated with recreational use of firing ranges or do-it-yourself home renovations. Lead poisoning is a preventable disease, yet these data indicate that additional prevention efforts are warranted.

Design of case report forms based on a public metadata registry: re-use of data elements to improve compatibility of data.

PubMed

Dugas, Martin

2016-11-29

Clinical trials use many case report forms (CRFs) per patient. Because of the astronomical number of potential CRFs, data element re-use at the design stage is attractive to foster compatibility of data from different trials. The objective of this work is to assess the technical feasibility of a CRF editor with connection to a public metadata registry (MDR) to support data element re-use. Based on the Medical Data Models portal, an ISO/IEC 11179-compliant MDR was implemented and connected to a web-based CRF editor. Three use cases were implemented: re-use at the form, item group and data element levels. CRF design with data element re-use from a public MDR is feasible. A prototypic system is available. The main limitation of the system is the amount of available MDR content.

Cancer incidence and mortality in China, 2014

PubMed Central

Chen, Wanqing; Sun, Kexin; Zheng, Rongshou; Zeng, Hongmei; Zhang, Siwei; Xia, Changfa; Yang, Zhixun; Li, He; Zou, Xiaonong; He, Jie

2018-01-01

Background National Central Cancer Registry of China (NCCRC) updated nationwide cancer statistics using population-based cancer registry data in 2014 collected from all available cancer registries. Methods In 2017, 449 cancer registries submitted cancer registry data in 2014, among which 339 registries’ data met the criteria of quality control and were included in analysis. These cancer registries covered 288,243,347 population, accounting for about 21.07% of the national population in 2014. Numbers of nationwide new cancer cases and deaths were estimated using calculated incidence and mortality rates and corresponding national population stratified by area, sex, age group and cancer type. The world Segi’s population was applied for age-standardized rates. Results A total of 3,804,000 new cancer cases were diagnosed, the crude incidence rate was 278.07/100,000 (301.67/100,000 in males, 253.29/100,000 in females) and the age-standardized incidence rate by world standard population (ASIRW) was 186.53/100,000. Calculated age-standardized incidence rate was higher in urban areas than in rural areas (191.6/100,000 vs. 179.2/100,000). South China had the highest cancer incidence rate while Southwest China had the lowest incidence rate. Cancer incidence rate was higher in female for population between 20 to 54 years but was higher in male for population younger than 20 years or over 54 years. A total of 2,296,000 cancer deaths were reported, the crude mortality rate was 167.89/100,000 (207.24/100,000 in males, 126.54/100,000 in females) and the age-standardized mortality rate by world standard population (ASMRW) was 106.09/100,000. Calculated age-standardized mortality rate was higher in rural areas than in urban areas (110.3/100,000 vs. 102.5/100,000). East China had the highest cancer mortality rate while North China had the lowest mortality rate. The mortality rate in male was higher than that in female. Common cancer types and major causes of cancer death differed between age group and sex. Conclusions Heavy cancer burden and its disparities between area, sex and age group pose a major challenge to public health in China. Nationwide cancer registry plays a crucial role in cancer prevention and control. PMID:29545714

Time Trends in Reported Autism Spectrum Disorders in Israel, 1986-2005

ERIC Educational Resources Information Center

Gal, Gilad; Abiri, Lili; Reichenberg, Abraham; Gabis, Lidia; Gross, Raz

2012-01-01

Reports indicate sharp increase in prevalence of autism spectrum disorders (ASD). We aimed to assess the time trend in prevalence of ASD in Israel and describe demographic characteristics of the registered cases. We reviewed the autism registry of the Israeli Ministry of Social Affairs which includes 4,709 cases and identified 4,138 cases born…

Underreporting of congenital rubella in Italy, 2010-2014.

PubMed

Giambi, Cristina; Bella, Antonino; Filia, Antonietta; Del Manso, Martina; Nacca, Gloria; Declich, Silvia; Rota, Maria Cristina

2017-07-01

In accordance with the goals of the World Health Organization Regional Committee for Europe, the Italian national Measles and Rubella Elimination Plan 2010-2015 aimed to reduce the incidence of congenital rubella cases to <1 case/100,000 live births by 2015. In Italy, a passive national surveillance system for congenital rubella and rubella in pregnancy is active since 2005. We estimated the degree of underreporting of congenital rubella, performing a capture-recapture analysis of cases detected through two independent sources: the national surveillance system and the national hospital discharge database, in the years 2010-2014. We found that 6 out of 11 cases tracked in the retrospective case-finding from hospital registries had not been notified to the surveillance system, and we estimated a degree of underreporting of 53% for the period 2010-2014. This approach showed to be simple to perform, repeatable, and effective. In order to reduce underreporting, some actions aimed at strengthening surveillance procedures are needed. The adoption on a routine basis of the review of hospital discharge registries for case-finding, monthly zero-reporting, and actions to train and sensitize all the specialists involved in the care of pregnant women and the newborns to notification procedures are recommended. What is Known • In Italy, the incidence of congenital rubella was below the WHO target of 1/100,000 live births in 2005-2015, except for two peaks in 2008 and 2012 (5 and 4/100,000, respectively). • Further efforts are required to improve congenital rubella surveillance so that it is more sensitive and specific. The WHO proposes retrospective case-finding from hospital records as an alternative approach to detect infants with congenital rubella. What is New • Underreporting of congenital rubella in Italy was 53% in 2010-2014. • Hospital discharge registries resulted to be an appropriate source to detect congenital rubella cases.

Occupational asthma after exposure to azodicarbonamide: report of four cases.

PubMed Central

Normand, J C; Grange, F; Hernandez, C; Ganay, A; Davezies, P; Bergeret, A; Prost, G

1989-01-01

Azodicarbonamide (Chemical Abstract Service Registry No 123.77.3) is an organic low molecular weight agent used for blowing and foaming plastics. Finely ground azodicarbonamide can be a pulmonary and sometimes a cutaneous acute sensitiser. Four cases of work related asthma are reported. PMID:2920144

Risk of cancer in patients with scleroderma: a population based cohort study

PubMed Central

Hill, C; Nguyen, A; Roder, D; Roberts-Thomson, P

2003-01-01

Background: Previous studies have suggested an increased risk of cancer among patients with scleroderma. Objective: To study a population based cohort of patients with scleroderma in South Australia. Methods: Subjects with scleroderma were identified from the South Australian Scleroderma Registry established in 1993. All subjects on the scleroderma registry were linked to the South Australian Cancer Registry to identify all cases of cancer until 31 December 2000. Standardised incidence ratios (SIRs) for cancer for subjects with scleroderma were determined using the age- and sex-specific rates for South Australia. Results: In 441 patients with scleroderma, 90 cases of cancer were identified, 47 of which developed after inclusion on the scleroderma registry. The SIRs for all cancers among these patients were significantly increased (SIR=1.99; 95% confidence interval (95% CI) 1.46 to 2.65) compared with the cancer incidence rates for South Australia. The SIRs for lung cancer (SIR=5.9; 95% CI 3.05 to 10.31) were also significantly increased. The SIRs for all cancers among the subgroups with diffuse scleroderma (SIR=2.73; 95% CI 1.31 to 5.02) and limited scleroderma (SIR=1.85; 95% CI 1.23 to 2.68) were significantly increased. Conclusions: This population based cohort study provides evidence that scleroderma is associated with cancer, and in particular, lung cancer. In addition, both diffuse and limited forms of scleroderma are associated with a similarly increased risk of cancer. PMID:12860727

Outcomes of Percutaneous Coronary Interventions for Chronic Total Occlusion Performed by Highly Experienced Japanese Specialists: The First Report From the Japanese CTO-PCI Expert Registry.

PubMed

Suzuki, Yoriyasu; Tsuchikane, Etsuo; Katoh, Osamu; Muramatsu, Toshiya; Muto, Makoto; Kishi, Koichi; Hamazaki, Yuji; Oikawa, Yuji; Kawasaki, Tomohiro; Okamura, Atsunori

2017-11-13

This report describes the registry and presents an initial analysis of outcomes for the different PCI approaches taken by the specialists. Strategies for percutaneous coronary intervention (PCI) for chronic total occlusion (CTO) are complex. The Japanese Board of CTO Interventional Specialists has developed a prospective, nonrandomized registry of patients undergoing CTO-PCIs performed by 41 highly experienced Japanese specialists. Over the study period of January 2014 to December 2015, the registry included 2,846 consecutive CTO-PCI cases undertaken in Japan. The authors compared clinical outcomes between the different PCI approaches, following the intention-to-treat principle. The overall technical success rate of the procedures was 89.9%. The specialists frequently chose a retrograde approach as the primary CTO-PCI strategy (in 27.8% of cases). The technical success rate of the primary antegrade approach was significantly better than that of the primary retrograde approach (91.0% vs. 87.3%; p < 0.0001). The technical success rate decreased to 78.0% with the rescue retrograde approach. Parallel guidewire crossing and intravascular ultrasound-guided wire crossing were performed after guidewire escalation during antegrade CTO-PCI with a high technical success rate (75.0% to 88.9%). Severe lesion calcification was a strong predictor of failed CTO-PCI. CTO-PCI performed by highly experienced specialists achieved a high technical success rate. Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Genetic, clinical and pharmacological determinants of out-of-hospital cardiac arrest: rationale and outline of the AmsteRdam Resuscitation Studies (ARREST) registry

PubMed Central

Blom, M T; van Hoeijen, D A; Bardai, A; Berdowski, J; Souverein, P C; De Bruin, M L; Koster, R W; de Boer, A; Tan, H L

2014-01-01

Introduction Out-of-hospital cardiac arrest (OHCA) is a major public health problem. Recognising the complexity of the underlying causes of OHCA in the community, we aimed to establish the clinical, pharmacological, environmental and genetic factors and their interactions that may cause OHCA. Methods and analysis We set up a large-scale prospective community-based registry (AmsteRdam Resuscitation Studies, ARREST) in which we prospectively include all resuscitation attempts from OHCA in a large study region in the Netherlands in collaboration with Emergency Medical Services. Of all OHCA victims since June 2005, we prospectively collect medical history (through hospital and general practitioner), and current and previous medication use (through community pharmacy). In addition, we include DNA samples from OHCA victims with documented ventricular tachycardia/fibrillation during the resuscitation attempt since July 2007. Various study designs are employed to analyse the data of the ARREST registry, including case–control, cohort, case only and case-cross over designs. Ethics and dissemination We describe the rationale, outline and potential results of the ARREST registry. The design allows for a stable and reliable collection of multiple determinants of OHCA, while assuring that the patient, lay-caregiver or medical professional is not hindered in any way. Such comprehensive data collection is required to unravel the complex basis of OHCA. Results will be published in peer-reviewed journals and presented at relevant scientific symposia. PMID:25332818

End stage renal disease in French Guiana (data from R.E.I.N registry): South American or French?

PubMed

Rochemont, Dévi Rita; Meddeb, Mohamed; Roura, Raoul; Couchoud, Cécile; Nacher, Mathieu; Basurko, Célia

2017-06-30

End-Stage renal disease (ESRD) causes considerable morbidity and mortality, and significantly alters patients' quality of life. There are very few published data on this problem in the French Overseas territories. The development of a registry on end stage renal disease in French Guiana in 2011 allowed to describe the magnitude of this problem in the region for the first time. Using data from the French Renal Epidemiology and Information Network registry (R.E.I.N). Descriptive statistics on quantitative and qualitative variables in the registry were performed on prevalent cases and incident cases in 2011, 2012 and 2013. French Guiana has one of the highest ESRD prevalence and incidence in France. The two main causes of ESRD were hypertensive and diabetic nephropathies. The French Guianese population had a different demographic profile (younger, more women, more migrants) than in mainland France. Most patients had at least one comorbidity, predominantly (95.3%) hypertension. In French Guiana dialysis was initiated in emergency for 71.3% of patients versus 33% in France (p < 0.001). These first results give important public health information: i) End stage renal disease has a very high prevalence relative to mainland France ii) Patients have a different demographic profile and enter care late in the course of their renal disease. These data are closer to what is observed in the Caribbean or in Latin America than in Mainland France.

Attention Deficit/Hyperactivity Disorder and Childhood Autism in Association with Prenatal Exposure to Perfluoroalkyl Substances: A Nested Case–Control Study in the Danish National Birth Cohort

PubMed Central

Liew, Zeyan; Ritz, Beate; von Ehrenstein, Ondine S.; Bech, Bodil Hammer; Nohr, Ellen Aagaard; Fei, Chunyuan; Bossi, Rossana; Henriksen, Tine Brink; Bonefeld-Jørgensen, Eva Cecilie

2014-01-01

Background: Perfluoroalkyl substances (PFASs) are persistent pollutants found to be endocrine disruptive and neurotoxic in animals. Positive correlations between PFASs and neurobehavioral problems in children were reported in cross-sectional data, but findings from prospective studies are limited. Objectives: We investigated whether prenatal exposure to PFASs is associated with attention deficit/hyperactivity disorder (ADHD) or childhood autism in children. Methods: Among 83,389 mother–child pairs enrolled in the Danish National Birth Cohort during 1996–2002, we identified 890 ADHD cases and 301 childhood autism cases from the Danish National Hospital Registry and the Danish Psychiatric Central Registry. From this cohort, we randomly selected 220 cases each of ADHD and autism, and we also randomly selected 550 controls frequency matched by child’s sex. Sixteen PFASs were measured in maternal plasma collected in early or mid-pregnancy. We calculated risk ratios (RRs) using generalized linear models, taking into account sampling weights. Results: Perfluorooctane sulfonate (PFOS) and perfluorooctanoic acid (PFOA) were detected in all samples; four other PFASs were quantified in ≥ 90% of the samples. We did not find consistent evidence of associations between mother’s PFAS plasma levels and ADHD [per natural log nanograms per milliliter increase: PFOS RR = 0.87 (95% CI: 0.74, 1.02); PFOA RR = 0.98 (95% CI: 0.82, 1.16)] or autism [per natural log nanograms per milliliter increase: PFOS RR = 0.92 (95% CI: 0.69, 1.22); PFOA RR = 0.98 (95% CI: 0.73, 1.31)]. We found positive as well as negative associations between higher PFAS quartiles and ADHD in models that simultaneously adjusted for all PFASs, but these estimates were imprecise. Conclusions: In this study we found no consistent evidence to suggest that prenatal PFAS exposure increases the risk of ADHD or childhood autism in children. Citation: Liew Z, Ritz B, von Ehrenstein OS, Bech BH, Nohr EA, Fei CY, Bossi R, Henriksen TB, Bonefeld-Jørgensen EC, Olsen J. 2015. Attention deficit/hyperactivity disorder and childhood autism in association with prenatal exposure to perfluoroalkyl substances: a nested case–control study in the Danish National Birth Cohort. Environ Health Perspect 123:367–373; http://dx.doi.org/10.1289/ehp.1408412 PMID:25616253

[Retrospective census of cancers between 1994 and 2002 around the municipal solid waste incinerator of Gilly-sur-Isère].

PubMed

Thabuis, A; Schmitt, M; Megas, F; Fabres, B

2007-12-01

The retrospective cancer incidence study carried out around the municipal solid waste incinerator of Gilly-sur-Isère (Savoie, France) was ordered in a context of crisis during its closing in the late 2001. Its purpose was to determine whether or not there was an excessive number of cancers around the incinerator. In the absence of cancer registry in Savoie, this study consisted in counting as exhaustively as possible the cancers that occurred between 1994 and 2002 in the study area, which was exposed to the atmospheric fallouts from the incinerator. Thus, it was planned to compare the observed cancer incidence to the French cancer registries'. This work describes the main difficulties encountered as well as the solutions found during the census of cancer cases; the results of the incidence study are not included. The collection of medical data was carried out thanks to multiple sources of information: pathology and hematology laboratories, hospitals' and clinics' departments of medical information, health insurance funds, liberal practitioners or specialised cancer registries. The collected medical data files were dealt with: looking for the missing addresses, selecting patients from the study area, homogenizing cancers coding, merging files into a single database, analysing available information on each cancer and de-duplicating the database. Most cancers were validated by consulting medical folders so as to exclude the false cases like metastasises of a known primary cancer or recurrences. Two thousand eight hundred and forty-five cancers were initially collected, and 28% of them were excluded because they did not correspond to the case definition (no proof of cancer, diagnosis date before the study period...); the final database was made of 2055 cancer cases. Quality indicators showed that the database could be considered as exhaustive and valid as a registry's. Three types of sources allowed to identify 94% of cases: laboratories, hospitals' departments of medical information and health insurance funds. Using administrative data and consulting medical folders turned out to be necessary considering uncertainties about: the patients' residence at the time of the diagnosis, errors in coding cancers in some databases that were collected and difficulties to identify false cases. This census required very important means.

Adoption and implementation of mandated diabetes registries by community health centers.

PubMed

Helfrich, Christian D; Savitz, Lucy A; Swiger, Kathleen D; Weiner, Bryan J

2007-07-01

Innovations adopted by healthcare organizations are often externally mandated. However, few studies examine how mandated innovations progress from adoption to sustained effective use. This study uses Rogers's model of organizational innovation to explore community health centers' (CHCs') mandated adoption and implementation of disease registries in the federal Health Disparities Collaborative (HDC). Case studies were conducted on six CHCs in North Carolina participating in the HDC on type 2 diabetes mellitus. Data were collected from semistructured interviews with key staff, and from site-level and individual-level surveys. Although disease registry adoption and implementation were mandated, CHCs exercised prerogative in the timing of registry adoption and the functions emphasized. Executive and medical director involvement, often directly on the HDC teams, was the single most salient influence on adoption and implementation. Staff members' personal experience with diabetes also provided context and gave registries added significance. Participants lauded HDC's technique of small-scale, rapid-cycle change, but valued even more shared problem solving and peer learning among HDC teams. However, lack of cross-training, inadequate resources, and staff turnover posed serious threats to sustainability of the registries. The present study illustrates the usefulness of Rogers's model for studying mandated innovation and highlights several key factors, including direct, personal involvement of organizational leadership, and shared problem solving and peer learning facilitated by the HDC. However, these six CHCs elected to participate early in the HDC, and may not be typical of North Carolina's remaining CHCs. Furthermore, most face important long-term challenges that threaten routinization.

Is there evidence for correct diagnosis in cystic fibrosis registries?

PubMed

Thomas, Muriel; Lemonnier, Lydie; Gulmans, Vincent; Naehrlich, Lutz; Vermeulen, François; Cuppens, Harry; Castellani, Carlo; Norek, Aleksandra; De Boeck, Kris

2014-05-01

Cystic fibrosis (CF) spans a wide spectrum. Therefore, benchmarking between registries implies comparing similar cohorts. Explore patient characteristics in Belgian (B), French (F), German (G) and Dutch (NL) registries (total N=13,122) and determine whether they fulfill predefined diagnostic criteria. Using as case definition sweat chloride >60mmol/L or 2 CFTR mutations identified, CF diagnosis was not documented in 2.8, 5.7, 6.5 and 21.6% of subjects in the F, B, NL, and G registries. Restricting CFTR mutation interpretation to 124 CF causing mutations in CFTR2, these numbers rose to 10.5, 10.4, 14.5 and 24.3% respectively. Excluding these subjects impacted on outcomes. The impact differed between countries; the largest changes seen were a decrease in % adults from 51.9 to 47.8% in G, a decrease in % pancreas sufficiency from 17.0 to 13.0 in F, an increase in % homozygous for F508del from 55.3 to 63.7 in NL and a decrease of % with sweat chloride ≤60mmol/L from 8.4 to 1.1 in B. CF diagnosis is not documented in 10 to 24% of patients included in CF registries. Excluding these patients for analyses leads to significant changes in outcomes. © 2013.

The quest for population-level cancer recurrence data; current deficiencies and targets for improvement.

PubMed

In, Haejin; Simon, Cassie A; Phillips, Jerri Linn; Posner, Mitchell C; Ko, Clifford Y; Winchester, David P

2015-05-01

Cancer recurrence is a critical outcome in cancer care. However, population-level recurrence information is currently unavailable. Tumor registries provide an opportunity to generate this information, but require major reform. Our objectives were to (1) determine causes for variability in collection of recurrence, and (2) identify targets for intervention. On-site interviews and observations of tumor registry follow-up procedures were conducted at Commission on Cancer (CoC) accredited hospitals. Information regarding registry resources (caseload, staffing, chart availability), follow-up methods and perceived causes for difficulty in obtaining recurrence information was obtained. Seven NCI/academic, 5 comprehensive community and 2 community centers agreed to participate. Hospitals were inconsistent in their investigation of cancer recurrence, resulting in underreporting of rates of recurrence. Hospital characteristics, registry staffing, staff qualifications and medical chart access influenced follow-up practices. Coding standards and definitions for recurrence were suboptimal, resulting in hospital variability of recurrence reporting. Finally, inability to identify cases lost to follow-up in collected data prevents accurate analysis of recurrence rates. Tumor registries collect varying degrees of recurrence information and provide the underpinnings to capture population-level cancer recurrence data. Targets for intervention are listed, and provide a roadmap to obtain this critical information in cancer care. © 2015 Wiley Periodicals, Inc.

Protocol update and preliminary results of EACVI/HFA Cardiac Oncology Toxicity (COT) Registry of the European Society of Cardiology.

PubMed

Lancellotti, Patrizio; Galderisi, Maurizio; Donal, Erwan; Edvardsen, Thor; Popescu, Bogdan A; Farmakis, Dimitrios; Filippatos, Gerasimos; Habib, Gilbert; Lestuzzi, Chiara; Santoro, Ciro; Moonen, Marie; Jerusalem, Guy; Andarala, Maryna; Anker, Stefan D

2017-08-01

European Association of Cardiovascular Imaging/Heart Failure Association Cardiac Oncology Toxicity Registry was launched in October 2014 as a European Society of Cardiology multicentre registry of breast cancer patients referred to imaging laboratories for routine surveillance, suspected, or confirmed anticancer drug-related cardiotoxicity (ADRC). After a pilot phase (1 year recruitment and 1 year follow-up), some changes have been made to the protocol (version 1.0) and electronic case report form. Main changes of the version 2.0 concerned exclusion criteria, registry duration, and clarification of the population characteristics. Breast cancer radiotherapy has been removed as an exclusion criterion, which involves now only history of a pre-chemotherapy left ventricular dysfunction. The period for long-term registry recruitment has been reduced (December 2017), but the target study population was extended to 3000 patients. The characteristics of the population are now better defined: patients seen in an imaging lab, which will include patients undergoing chemotherapy with associated targeted therapy or no targeted therapy, at increased risk of ADRC. In total, 1294 breast cancer patients have been enrolled, and 783 case report forms locked from October 2014 to November 2016. Of these, 481 (61.4%) were seen at first evaluation and 302 (38.6%) while on oncologic treatment with anticancer drugs. Fifty-two patients (17.2%) were not in targeted therapies, 191 (63.3%) were ongoing targeted therapy, and 59 (19.5%) had completed it. Twenty-three (2.9%) patients had a suspected diagnosis and 35 (4.5%) a confirmed diagnosis of ADRC. Arterial hypertension was the most prevalent cardiovascular risk factor (29.2%) followed by diabetes (6.1%). Previous history of heart failure accounted for 0.5%, whereas previous cardiac disease was identified in 6.3% of population. The changes of the original protocol of the COT Registry and first update allow a first glance to the panorama of cardiovascular characteristics of breast cancer patients enrolled. © 2017 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of the European Society of Cardiology.

Protocol update and preliminary results of EACVI/HFA Cardiac Oncology Toxicity (COT) Registry of the European Society of Cardiology

PubMed Central

Galderisi, Maurizio; Donal, Erwan; Edvardsen, Thor; Popescu, Bogdan A.; Farmakis, Dimitrios; Filippatos, Gerasimos; Habib, Gilbert; Lestuzzi, Chiara; Santoro, Ciro; Moonen, Marie; Jerusalem, Guy; Andarala, Maryna; Anker, Stefan D.

2017-01-01

Abstract Aims European Association of Cardiovascular Imaging/Heart Failure Association Cardiac Oncology Toxicity Registry was launched in October 2014 as a European Society of Cardiology multicentre registry of breast cancer patients referred to imaging laboratories for routine surveillance, suspected, or confirmed anticancer drug‐related cardiotoxicity (ADRC). After a pilot phase (1 year recruitment and 1 year follow‐up), some changes have been made to the protocol (version 1.0) and electronic case report form. Methods and results Main changes of the version 2.0 concerned exclusion criteria, registry duration, and clarification of the population characteristics. Breast cancer radiotherapy has been removed as an exclusion criterion, which involves now only history of a pre‐chemotherapy left ventricular dysfunction. The period for long‐term registry recruitment has been reduced (December 2017), but the target study population was extended to 3000 patients. The characteristics of the population are now better defined: patients seen in an imaging lab, which will include patients undergoing chemotherapy with associated targeted therapy or no targeted therapy, at increased risk of ADRC. In total, 1294 breast cancer patients have been enrolled, and 783 case report forms locked from October 2014 to November 2016. Of these, 481 (61.4%) were seen at first evaluation and 302 (38.6%) while on oncologic treatment with anticancer drugs. Fifty‐two patients (17.2%) were not in targeted therapies, 191 (63.3%) were ongoing targeted therapy, and 59 (19.5%) had completed it. Twenty‐three (2.9%) patients had a suspected diagnosis and 35 (4.5%) a confirmed diagnosis of ADRC. Arterial hypertension was the most prevalent cardiovascular risk factor (29.2%) followed by diabetes (6.1%). Previous history of heart failure accounted for 0.5%, whereas previous cardiac disease was identified in 6.3% of population. Conclusion The changes of the original protocol of the COT Registry and first update allow a first glance to the panorama of cardiovascular characteristics of breast cancer patients enrolled. PMID:28772051

Ensuring quality in studies linking cancer registries and biobanks.

PubMed

Langseth, Hilde; Luostarinen, Tapio; Bray, Freddie; Dillner, Joakim

2010-04-01

The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.

Effects of the length of central cancer registry operations on identification of subsequent cancers and on survival estimates.

PubMed

Qiao, Baozhen; Schymura, Maria J; Kahn, Amy R

2016-10-01

Population-based cancer survival analyses have traditionally been based on the first primary cancer. Recent studies have brought this practice into question, arguing that varying registry reference dates affect the ability to identify earlier cancers, resulting in selection bias. We used a theoretical approach to evaluate the extent to which the length of registry operations affects the classification of first versus subsequent cancers and consequently survival estimates. Sequence number central was used to classify tumors from the New York State Cancer Registry, diagnosed 2001-2010, as either first primaries (value=0 or 1) or subsequent primaries (≥2). A set of three sequence numbers, each based on an assumed reference year (1976, 1986 or 1996), was assigned to each tumor. Percent of subsequent cancers was evaluated by reference year, cancer site and age. 5-year relative survival estimates were compared under four different selection scenarios. The percent of cancer cases classified as subsequent primaries was 15.3%, 14.3% and 11.2% for reference years 1976, 1986 and 1996, respectively; and varied by cancer site and age. When only the first primary was included, shorter registry operation time was associated with slightly lower 5-year survival estimates. When all primary cancers were included, survival estimates decreased, with the largest decreases seen for the earliest reference year. Registry operation length affected the identification of subsequent cancers, but the overall effect of this misclassification on survival estimates was small. Survival estimates based on all primary cancers were slightly lower, but might be more comparable across registries. Copyright © 2016 Elsevier Ltd. All rights reserved.

Inclusion of 'minor' trauma cases provides a better estimate of the total burden of injury: Queensland Trauma Registry provides a unique perspective.

PubMed

Lang, Jacelle; Dallow, Natalie; Lang, Austin; Tetsworth, Kevin; Harvey, Kathy; Pollard, Cliff; Bellamy, Nicholas

2014-08-01

Injury is recognised as a frequent cause of preventable mortality and morbidity; however, incidence estimates focusing only on the extent of mortality and major trauma may seriously underestimate the magnitude of the total injury burden. There currently exists a paucity of information regarding minor trauma, and the aim of this study was to increase awareness of the contribution of minor trauma cases to the total burden of injury. The demographics, injury details, acute care factors and outcomes of both minor trauma cases and major trauma cases were evaluated using data from the state-wide trauma registry in Queensland, Australia, from 2005 to 2010. The impact of changes in Abbreviated Injury Scale (AIS) versions on the classification of minor and major injury cases was also assessed. Over the 6-year period, minor cases [Injury Severity Score (ISS) ≤ 12] accounted for almost 90% of all trauma included on the Queensland Trauma Registry (QTR). These cases utilised more than half a million acute care bed days, underwent more than 66,500 operations, and accounted for more than 48,000 patient transport episodes via road ambulance, fixed wing aircraft, or helicopter. Furthermore, more than 5800 minor trauma cases utilised in-hospital rehabilitation services; almost 3000 were admitted to an ICU; and more than 20,000 were admitted to hospital for greater than one week. When using the contemporary criteria for classifying trauma (AIS 08), the proportion of cases classified as minor trauma (87.7%) and major trauma (12.3%) were similar to the proportion using the traditional criteria for AIS90 (87.9% and 12.1%, respectively). This evaluation of minor trauma cases admitted to public hospitals in Queensland detected high levels of demand placed on trauma system resources in terms of acute care bed days, operations, ICU admissions, in-hospital rehabilitation services and patient transportation, and which are all associated with high cost. These data convincingly demonstrate the significant burden of injury imposed by minor trauma cases serious enough to be admitted to hospital. Copyright © 2014 Elsevier Ltd. All rights reserved.

ISHKS joint registry: A preliminary report.

PubMed

Pachore, Jawahir A; Vaidya, Shrinand V; Thakkar, Chandrasekhar J; Bhalodia, Haresh Kumar P; Wakankar, Hemant M

2013-09-01

Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are the most widely practiced surgical options for arthritis all over the world and its application is rising in India. Indian Society of Hip and Knee Surgeons (ISHKS) has established a joints registry and has been collecting data for last 6 years. All members of ISHKS are encouraged to actively participate in the registry. A simple two page knee and hip form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25%) and 25,866 females (75%). Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years). Average body mass index was 29.1 (Range: 18.1 to 42.9). The indication for TKA was osteoarthritis in 33,444 (97%) and rheumatoid arthritis in 759 (2.2%). Total of 3604 THA procedures were recorded. These included 2162 (60%) male patients and 1442 (40%) female patients. Average age was 52 years (Range 17 to 85 years) and average BMI was 25.8 (Range: 17.3 to 38.5). The indications for THA was AVN in 49%. The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

Long-term (>3 Years) outcome and predictors of clinical events after insertion of sirolimus-eluting stent in one or more native coronary arteries (from the Israeli arm of the e-Cypher registry).

PubMed

Planer, David; Beyar, Rafael; Almagor, Yaron; Banai, Shmuel; Guetta, Victor; Miller, Hilton; Kornowski, Ran; Brandes, Simcha; Krakover, Ricardo; Solomon, Mivi; Lotan, Chaim

2008-04-01

The aim of this study was to evaluate long-term (3.4 years) outcomes and predictors of clinical events in patients treated with sirolimus-eluting stents in the Israeli arm of the e-Cypher registry. From July 2002 to October 2003, 488 patients from 8 medical centers in Israel were enrolled in the e-Cypher registry. Nineteen patients with interventions in venous grafts were excluded from the final analysis. Long-term follow-up was completed for 98% of the remaining patients. There were 29 cases (6.3%) of death (3.9% cardiac and 2.4% noncardiac deaths). According to the broad academic research consortium definition of stent thrombosis, there were 19 cases (4%) of stent thrombosis (incidence density 0.9 cases/100 patient-years). There were 46 cases (9.9%) of target lesion revascularization and 76 cases (16.3%) of major adverse cardiac events (combination of death, myocardial infarction, and target lesion revascularization). Independent predictors of stent thrombosis were renal failure (hazard ratio 9.6, 95% confidence interval 1.9 to 47), stent length (hazard ratio 1.1, 95% confidence interval 1 to 1.2), and the off-label use of sirolimus-eluting stents (hazard ratio 5.3, 95% confidence interval 1.2 to 24). In conclusion, during >3 years of follow-up, stent thrombosis, major adverse cardiac events, and target lesion revascularization continued at constant rates over time. Clinical parameters such as renal failure and procedural parameters such as off-label use and stent length were independent predictors of stent thrombosis.

Filing for workers’ compensation among Ontario cases of mesothelioma

PubMed Central

Payne, Jennifer Isabelle; Pichora, Erin

2009-01-01

BACKGROUND/OBJECTIVE: For many types of cancer, disease attribution to occupational exposures is difficult. Mesothelioma, however, is a ‘sentinel’ occupational cancer associated with asbestos exposure. The present study linked workers’ compensation claims data with cancer registry data to explore the completeness of reporting of mesothelioma to the Ontario Workplace Safety and Insurance Board (WSIB) according to characteristics of cases diagnosed among Ontario residents. METHODS: Two data sources were linked at the person level: the WSIB Occupational Disease Information and Surveillance System and the Ontario Cancer Registry. Filing rates were calculated as the proportion of Ontario Cancer Registry mesothelioma cases (International Classification of Diseases – Oncology code 905) that linked to a WSIB-filed cancer claim. Filing rates were calculated for the period 1980 to 2002, and trends were calculated by year, age and county of residence at diagnosis. RESULTS: The filing rate for compensation has increased little over the past 20 years, reaching a high of 43% in 2000. Overall, filing rates were highest among pleural mesothelioma cases among men (range 27% to 57%). Filing rates were highest among individuals 50 to 59 years of age and declined substantially throughout the retirement years. There was substantial variation in filing rates by area of residence, with the highest rate being in Lambton County, Ontario. CONCLUSION: The filing rate for compensation in Ontario was much lower than the estimated proportion of cases eligible for compensation. The increased filing rate in Lambton County was likely related to this community’s awareness of the association between asbestos and mesothelioma. Physicians can play an important role in educating patients of their potential entitlement to compensation benefits. PMID:19851532

Relation of the Brugada Phenocopy to Hyperkalemia (from the International Registry on Brugada Phenocopy).

PubMed

Xu, Grace; Gottschalk, Byron H; Anselm, Daniel D; Benditt, David G; Maheshwari, Ankit; Sreenivasan, Shiva; Shama, Raed Abu; Dendramis, Gregory; Barajas-Martínez, Héctor; Rubio Campal, José Manuel; Aznaurov, Sam G; Baranchuk, Adrian

2018-03-15

Brugada phenocopies (BrPs) are clinical entities that differ in etiology from true congenital Brugada syndrome but have identical electrocardiographic (ECG) patterns. Hyperkalemia is known to be one of the causes of BrP. The aim of this study was to determine the clinical characteristics and evolution of hyperkalemia-induced BrP. Data from 27 cases of hyperkalemia-induced BrP were collected from the International Registry at www.brugadaphenocopy.com. Data were extracted from publications. Of the 27 patients included in the analysis, 18 (67%) were male; mean age was 53 ± 15 years (range 31 to 89). Mean serum potassium concentration was 7.45 ± 0.89 mmol/L. Type-1 Brugada ECG pattern was observed in 21 cases (78%), whereas 6 cases (22%) showed a type-2 Brugada ECG pattern. The Brugada ECG pattern resolved once the hyperkalemia was corrected, with no arrhythmic events. Estimated time to resolution was 7 ± 3 hours. In 4 cases (16%), a concurrent metabolic abnormality was detected: 3 (11%) presented with acidosis, 2 (7%) with hyponatremia, 1 (4%) with hypocalcaemia, 1 (4%) with hyperphosphatemia, and 1 (4%) with hyperglycemia. In 7 cases (26%), provocative testing using sodium channel blockers was performed, and all failed to reproduce a BrS ECG pattern (BrP class A). Additionally, no sudden cardiac death or malignant ventricular arrhythmias were detected. Hyperkalemia was found a common cause of BrP in our International Registry. The Brugada ECG pattern appears to occur at high serum potassium concentrations (>6.5 mmol/L). The ECG normalizes within hours of correcting the electrolyte imbalance. Importantly, hyperkalemia-induced BrP has not been associated with sudden cardiac death or ventricular arrhythmia. Copyright © 2017 Elsevier Inc. All rights reserved.

Cancer incidence and mortality in Shandong province, 2012.

PubMed

Fu, Zhentao; Lu, Zilong; Li, Yingmei; Zhang, Jiyu; Zhang, Gaohui; Chen, Xianxian; Chu, Jie; Ren, Jie; Liu, Haiyan; Guo, Xiaolei

2016-06-01

Population-based cancer registration data in 2012 from all available cancer registries in Shandong province were collected by Shandong Center for Disease Control and Prevention (SDCDC). SDCDC estimated the numbers of new cancer cases and cancer deaths in Shandong province with compiled cancer incidence and mortality rates. In 2015, there were 21 cancer registries submitted data of cancer incidence and deaths occurred in 2012. All the data were checked and evaluated based on the National Central Cancer Registry (NCCR) criteria of data quality. Qualified data from 15 registries were used for cancer statistics analysis as provincial estimation. The pooled data were stratified by area (urban/rural), gender, age group (0, 1.4, 5.9, 10.14, …, 85+ years) and cancer type. New cancer cases and deaths were estimated using age-specific rates and corresponding provincial population in 2012. The Chinese census data in 2000 and Segi's population were applied for age-standardized rates. All the rates were expressed per 100,000 person-year. Qualified 15 cancer registries (4 urban and 11 rural registries) covered 17,189,988 populations (7,486,039 in urban and 9,703,949 in rural areas). The percentage of cases morphologically verified (MV%) and death certificate-only cases (DCO%) were 66.12% and 2.93%, respectively, and the mortality to incidence rate ratio (M/I) was 0.60. A total of 253,060 new cancer cases and 157,750 cancer deaths were estimated in Shandong province in 2012. The incidence rate was 263.86/100,000 (303.29/100,000 in males, 223.23/100,000 in females), the age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 192.42/100,000 and 189.50/100,000 with the cumulative incidence rate (0.74 years old) of 22.07%. The cancer incidence, ASIRC and ASIRW in urban areas were 267.64/100,000, 195.27/100,000 and 192.02/100,000 compared to 262.32/100,000, 191.26/100,000 and 188.48/100,000 in rural areas, respectively. The cancer mortality was 164.47/100,000 (207.42/100,000 in males, 120.23/100,000 in females), the age-standardized incidence rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 117.54/100,000 and 116.90/100,000, and the cumulative mortality rate (0.74 years old) was 13.53%. The cancer mortality, ASMRC and ASMRW were 141.59/100,000, 101.17/100,000 and 100.33/100,000 in urban areas, and 173.79/100,000, 124.20/100,000 and 123.64/100,000 in rural areas, respectively. Cancers of the lung, stomach, liver, esophagus, colorectum, female breast, brain, leukemia, bladder and pancreas were the most common cancers, accounting for about 82.12% of all cancer new cases. Lung cancer, stomach cancer, liver cancer, esophageal cancer, colorectal cancer, female breast cancer, pancreatic cancer, brain tumor, leukemia and lymphoma were the leading causes of cancer death, accounting for about 89.01% of all cancer deaths. The cancer spectrum showed difference between urban and rural, males and females both in incidence and mortality rates. Cancer surveillance information in Shandong province is making great progress with the increasing number of cancer registries, population coverage and the improving data quality. Cancer registration plays a fundamental role in cancer control by providing basic information on population-based cancer incidence, mortality, survival and time trend. The disease burden of cancer is serious in Shandong province, and so cancer prevention and control in Shandong province should be enhanced including health education, health promotion, cancer screening and cancer care services.

Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

PubMed

Ryerson, A Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

2015-12-01

Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. Published by Elsevier Inc.

Perspectives of Canadian oocyte donors and recipients on donor compensation and the establishment of a personal health information registry.

PubMed

Blyth, Eric; Yee, Samantha; Ka Tat Tsang, A

2012-01-01

We report the views of 33 women who were involved in an altruistic oocyte donation program about provisions under Canada's Assisted Human Reproduction Act 2004 to prohibit donor compensation and to establish a Personal Health Information Registry. The participants had been either donors of oocytes to a recipient known to them (15) or recipients of such donation (18) through services provided by a clinic in a large Canadian city, and they each participated in a semi-structured face-to-face or telephone interview. Among the 15 donor participants, seven were friends of the recipient, six were sisters, one was a niece of the recipient, and one donor donated twice, once to her sister and once to a friend. In eight cases the donor and recipient participated in interviews independently. At the time of interview, 11 of the 25 separate cases had resulted in a live birth and one in an ongoing pregnancy, so that "successful" and "unsuccessful" donations were equally represented among participants. While divergent views were reported among and between donors and recipients on an altruistic model versus a compensated model of donation, most participants largely endorsed the establishment of a personal health information registry.

Matching study to registry data: maintaining data privacy in a study on family based colorectal cancer.

PubMed

Nasseh, Daniel; Engel, Jutta; Mansmann, Ulrich; Tretter, Werner; Stausberg, Jürgen

2014-01-01

Confidentiality of patient data in the field of medical informatics is an important task. Leaked sensitive information within this data can be adverse to and being abused against a patient. Therefore, when working with medical data, appropriate and secure models which serve as guidelines for different applications are needed. Consequently, this work presents a model for performing a privacy preserving record linkage between study and registry data. The model takes into account seven requirements related to data privacy. Furthermore, this model is exemplified with a study on family based colorectal cancer in Germany. The model is very strict and excludes possible violations towards data privacy protection to a reasonable degree. It should be applicable to similar use cases which are in need of a mapping between medical data of a study and a registry database.

Using NLP to identify cancer cases in imaging reports drawn from radiology information systems.

PubMed

Patrick, Jon; Asgari, Pooyan; Li, Min; Nguyen, Dung

2013-01-01

A Natural Language processing (NLP) classifier has been developed for the Victorian and NSW Cancer Registries with the purpose of automatically identifying cancer reports from imaging services, transmitting them to the Registries and then extracting pertinent cancer information. Large scale trials conducted on over 40,000 reports show the sensitivity for identifying reportable cancer reports is above 98% with a specificity above 96%. Detection of tumour stream, report purpose, and a variety of extracted content is generally above 90% specificity. The differences between report layout and authoring strategies across imaging services appear to require different classifiers to retain this high level of accuracy. Linkage of the imaging data with existing registry records (hospital and pathology reports) to derive stage and recurrence of cancer has commenced and shown very promising results.

Case Report of Kidney Paired Donation (KPD) with Desensitization: the Strategy and Experience of 3-Way KPD in Samsung Medical Center.

PubMed

Oh, Dongkyu; Kang, Eun Suk; Yu, Shinae; Chun, Kyoungsuk; Huh, Wooseong; Jang, Hye Ryoun; Cho, Chan Woo; Lee, Nuri; Lee, Kyo Won; Park, Hyojun; Park, Jae Berm; Kim, Sung Joo

2018-01-29

As the need for the organ donation increases, strategies to increase kidney transplantation (KT) through expanded living donation have become essential. These include kidney paired donation (KPD) programs and desensitization in incompatible transplantations. KPD enables kidney transplant candidates with incompatible living donors to join a registry with other incompatible pairs in order to find potentially compatible living donor. Positive cross match and ABO incompatible transplantation has been successfully accomplished in selective cases with several pre-conditionings. Patients who are both difficult-to-match due to broad sensitization and hard-to-desensitize because of donor conditions can often be successfully transplanted through a combination of KPD and desensitization. According to the existing data, KPD can increase the number of KTs from living donors with excellent clinical results. This is also a cost-effective treatment as compared with dialysis and desensitization protocols. We carried out 3-way KPD transplantation with one highly sensitized, positive cross match pair and with two ABO incompatible pairs. Herein we report our first successful 3-way KPD transplantation in a single center. To maximize donor-recipient matching and minimize immunologic risk, KPD programs should use proper algorithms with desensitization to identify optimal donor with simultaneous two-, three- or more complex multi-way exchanges. © 2018 The Korean Academy of Medical Sciences.

Gastric Cancer Incidence Estimation in a Resource-Limited Nation: Use of Endoscopy Registry Methodology

PubMed Central

Dominguez, Ricardo L.; Crockett, Seth D.; Lund, Jennifer L.; Suazo, Lia P.; Heidt-Davis, Paris; Martin, Christopher; Morgan, Douglas R.

2013-01-01

Purpose Cancer epidemiology is challenging in developing nations, in the absence of reliable pathology-based cancer registries. Clinical experience suggests that the incidence of gastric cancer is high in Honduras, in contrast to the limited available national statistics at the time of study initiation (IARC GLOBOCAN 2002: males 15.2, females 10.8). We estimate the incidence of gastric cancer for Honduras using an endoscopy registry as a complimentary resource. Methods We conducted a retrospective analysis of incident noncardia gastric adenocarcinoma cases in Western Honduras for the period 2000–2009. This region is well circumscribed geopolitically with a single district hospital and established referral patterns, to provide a unique epidemiological niche to facilitate estimation of incidence rates. A prospective, comprehensive database of all endoscopy procedures from this hospital was utilized at the primary data source. The catchment area for gastroenterology services for the at-risk population was validated by calculating the overall endoscopy utilization rates for each municipality in western Honduras. Incident cases of gastric adenocarcinoma were determined by the endoscopic diagnosis. Pathology services are not financed by the Ministry of Health, and histology data was incorporated when available. Population statistics were obtained from the Honduras National Statistics Institute (INE). Age standardized incidence rates (ASIRs) were calculated using world standard population fractions. Results The catchment area for Western Honduras was validated with the municipality threshold of 30 endoscopies per 106 person-years, with inclusion of a total of 40 municipalities. In the Western Honduras catchment area, there were 670 incident cases (439 M, 231 F) of noncardia gastric adenocarcinoma during the study decade 2000–2009. Notably, 67 (10.0%) and 165 (24.6%) of cases were under the ages of 45 and 55, respectively. The case-finding rate was 5.1 endoscopies performed for each new diagnosis of gastric cancer. The ASIRs for the decade were 30.8 for males and 13.9 for females. Clinically, 60.3% of gastric cancers were Borrmann type 3 (ulcerated mass), and evidence of advanced disease with pyloric obstruction was common (35.2%). Subtypes by the Lauren classification were distributed among diffuse (56%), intestinal (34%) and indeterminate (9.9%), in subjects with available pathology (526/670). Conclusions The endoscopy procedure registry may serve as a complimentary data resource for gastric cancer incidence estimation in resource-limited nation settings wherein pathology services and cancer registries are absent. The results remain an underestimation in this setting due to the challenges of access-to-care and related factors. The methodology helps to more fully characterize the high incidence of gastric cancer in western Honduras and this region of Central America, and demonstrate the need for additional epidemiology research and interventions focused on prevention and treatment. PMID:23263776

Brain Tumor Statistics

MedlinePlus

... Scientific Advisory Council & Reviewers The International Low Grade Glioma Registry Get Involved Advocacy Breakthrough for Brain Tumors ... an estimated 29,320 new cases in 2018. Gliomas , a broad term which includes all tumors arising ...

Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers.

PubMed

Dear, Rachel; Barratt, Alexandra; Askie, Lisa; McGeechan, Kevin; Arora, Sheena; Crossing, Sally; Currow, David; Tattersall, Martin

2011-02-01

Clinical trials registries are now operating in the USA, Europe, Australia, China, and India and more are planned. Trial registries could be an excellent source of information about clinical trials for patients and others affected by cancer as well as health care professionals, but may be difficult for patients to navigate and use. An opportunity arose in Australia to develop a consumer friendly cancer clinical trials website (Australian Cancer Trials Online (ACTO), www.australiancancertrials.gov.au) using an automated data feed from two large clinical trial registries. In this article, we describe aspects of this new website, and explore ways in which such a website may add value to clinical trial data which are already collected and held by trial registries. The development of ACTO was completed by a Web company working in close association with staff at the Australian New Zealand Clinical Trials Registry (ANZCTR), and with consumer representatives. Data for the website were sourced directly and only from clinical trial registries, thus avoiding the creation of an additional trials database. It receives an automated, daily data feed of newly registered cancer clinical trials from both the ANZCTR and Clinical Trials.gov. The development of ACTO exemplifies the advantage of a local clinical trial registry working with consumers to provide accessible information about cancer clinical trials to meet consumers' information needs. We found that the inclusion of a lay summary added substantial value for consumers, and recommend that consideration be given to adding a lay summary to the mandatory data items collected by all trial registries. Furthermore, improved navigation, decision support tools, and consistency in data collection between clinical trial registries will also enable consumer websites to provide additional value for users. Clinical trial registration is not compulsory in Australia. If the additional cancer items (including a lay summary) are not provided by registrants of cancer trials on ANZCTR, this can compromise the quality and usefulness of the data for the end-user, in this case consumers, as they may encounter gaps in the data. Expanding the World Health Organization Trial Registration Data Set to include this additional information, particularly the lay summary, would be valuable. A well-coordinated system of clinical trial registration is critical to the success of efforts to provide better access for all to inform about clinical trials.

Liver alone or simultaneous liver-kidney transplant? Pretransplant chronic kidney disease and post-transplant outcome - a retrospective study.

PubMed

Nagai, Shunji; Safwan, Mohamed; Collins, Kelly; Schilke, Randolph E; Rizzari, Michael; Moonka, Dilip; Brown, Kimberly; Patel, Anita; Yoshida, Atsushi; Abouljoud, Marwan

2018-05-02

The new Organ Procurement and Transplant Network/United Organ Sharing Network (OPTN/UNOS) simultaneous liver-kidney transplant (SLK) policy has been implemented. The aim of this study was to review liver transplant outcomes utilizing the new SLK policy. Liver transplant alone (LTA) and SLK patients between 2009 and 2015 were reviewed. Graft survival and post-transplant kidney function were investigated among LTA patients meeting the chronic kidney disease (CKD) criteria of the new policy (LTA-CKD group). To validate our findings, we reviewed and applied our analysis to the OPTN/UNOS registry. A total of 535 patients were eligible from our series. The LTA-CKD group (n = 27) showed worse 1-year graft survival, compared with the SLK group (n = 44), but not significant (81% vs. 93%, P = 0.15). The LTA-CKD group significantly increased a risk of post-transplant dialysis (odds ratio = 5.59 [95% CI = 1.27-24.7], P = 0.02 [Ref. normal kidney function]). Post-transplant dialysis was an independent risk factor for graft loss (hazard ratio = 7.25, 95% CI = 3.3-15.91, P < 0.001 [Ref. SLK]). In the validation analysis based on the OPTN/UNOS registry, the hazard of 1-year-graft loss in the LTA-CKD group (n = 751) was 34.8% higher than the SLK group (n = 2856) (hazard ratio = 1.348, 95% CI = 1.157-1.572, P < 0.001). Indicating SLK for patients who meet the CKD criteria may significantly improve transplant outcomes. © 2018 Steunstichting ESOT.

Work-related injuries resulting in death in Chile: a cross-sectional study on 2014 and 2015 registries

PubMed Central

2018-01-01

Objective To characterise work-related fatal events that occurred in Chile in 2014 and 2015 in workers covered by the Occupational Accidents and Professional Disease No 16.744 Act. Design Cross-sectional on registries of the Chilean Worker’s Health and Safety National Information System, specifically focusing on the Fatal Work Accidents Registry of the Social Security Superintendence. Study population Secondary data analysis on all 815 cases of occupational injury-related deaths registered in 2014 and 2015 in Chile and that were accredited by the Social Security Superintendence up to March 2016. Outcome measures Variables relating to employer, workers and the events were analysed. Results The overall mortality rate for all injuries, both at work and during commuting, per 100 000 workers affiliated to the occupational social security system, was 7.2 for 2014 and 7.3 for 2015. For 2014, the highest mortality rates occurred in the transport and communications sectors (20.15) and the mining sector (18.17), while for 2015 the highest rates were found in the fishing industry (11.3) and in mining (12.1). Seventy-two per cent of cases occurred in small and medium-sized enterprises. Half of the companies that had work-related fatal injuries did not have a risk prevention department. Twenty-two per cent (121) of the companies had previous labour law infractions. The four activities most affected by workers’ deaths in the two study years were freight land transport, engineering works under construction, minor works under construction and construction of complete buildings or parts of buildings. Half of all fatal injuries occurred in workers who had been employed for less than a year in their company. Conclusions This descriptive study provides valuable insight into the current national registry on occupational deaths in Chile. While containing valuable information, the registry was not designed for epidemiological surveillance. Further efforts are needed to achieve a proper epidemiological integration of surveillance data. PMID:29886445

Cancer Incidence in Kerman Province, Southeast of Iran: Report of an ongoing Population-Based Cancer Registry, 2014

PubMed

Shahesmaeili, Armita; Malekpour Afshar, Reza; Sadeghi, Azadeh; Bazrafshan, Azam

2018-06-25

Introduction: The epidemiology of common cancers in Kerman province, southeast of Iran, was assessed based upon results of the Kerman Population-Based Cancer Registry Program (KPBCR). Methods: in this retrospective study, all patients diagnosed with primary cancers and registered with the KPBCR were included. New cancer cases registered from 2014 were identified from pathological labs, medical reports of 48 health facilities providing cancer diagnosis or treatment services and the national death registry program. Data for patients who were referred to neighboring provinces to access health services were also collected from national referral registries. Results from autopsies was additionally extracted from regional forensic and legal medicine centers and added to the registry periodically. Age standardized incidence rates (ASRs) per 100,000 person-years for all cancers were computed, using direct-standardization and CanReg methodology. Mortality to incidence (M:I) ratios and microscopically verified (MV) proportions were calculated as quality measures. Results: A total of 2,838 cases of cancer were registered in Kerman province, 2014. Of these 45. 6% involved women (n=1,293). Individuals aged 60-64 years represented the largest proportion (11.6%) of the total cancer prevalence, followed by those aged 55-59 years (10.86%) and 65-69 years (8.99%). The ASRs for all cancers were 155.1 and 118.90 per 100,000, in men and women, respectively. In women, breast (ASR: 26.4), skin (ASR: 13.0), thyroid (ASR: 9.2), leukemia (ASR: 8.0) and colorectal (ASR: 7.70) were the most common cancers. In men, bladder (ASR: 24.70), skin (ASR: 16.80), lung (ASR: 14.6), leukemia (ASR: 14.50), and stomach (ASR: 10.8) were found to be the most frequent. Conclusion: This study provided latest evidence on epidemiology of cancer in the southeast of Iran that could be used to empower prevention and control interventions in a developing country. Creative Commons Attribution License

IL-6 blockade in systemic juvenile idiopathic arthritis - achievement of inactive disease and remission (data from the German AID-registry).

PubMed

Bielak, M; Husmann, E; Weyandt, N; Haas, J-P; Hügle, B; Horneff, G; Neudorf, U; Lutz, T; Lilienthal, E; Kallinich, T; Tenbrock, K; Berendes, R; Niehues, T; Wittkowski, H; Weißbarth-Riedel, E; Heubner, G; Oommen, P; Klotsche, J; Foell, Dirk; Lainka, E

2018-04-05

Systemic juvenile idiopathic arthritis (sJIA) is a complex disease with an autoinflammatory component of unknown etiology related to the innate immune system. A major role in the pathogenesis has been ascribed to proinflammatory cytokines like interleukin-6 (IL-6), and effective drugs inhibiting their signaling are being developed. This study evaluates sJIA patients treated with the IL-6 inhibitor tocilizumab (TCZ) concerning clinical response rate, disease course and adverse effects in a real-life clinical setting. In 2009 a clinical and research consortium was established, including an online registry for autoinflammatory diseases (AID) ( https://aid-register.de ). Data for this retrospective TCZ study were documented by 13 centers. From 7/2009 to 4/2014, 200 patients with sJIA were recorded in the AID-registry. Out of these, 46 (19 m, 27 f, age 1-18 years) received therapy with TCZ. Long term treatment (median 23 months) has been documented in 24/46 patients who were evaluated according to Wallace criteria (active disease 6/24, inactive disease 5/24, remission 13/24 cases). Under observation co-medication were used in 40/46 cases. Adverse events were reported in 11/46 patients. The clinical response rate (no clinical manifestation, no increased inflammation parameters) within the first 12 weeks of treatment was calculated to be 35%. Out of 200 sJIA children reported in the German AID-registry, 46 were treated with TCZ, showing a clinical response rate of 35% during the first 12 weeks, and inactive disease and/or remission under medication in 75% after one year. Adverse events were seen in 24% and severe adverse events in 4%. The AID-Registry is funded by the BMBF (01GM08104, 01GM1112D, 01GM1512D).

Using administrative claims to identify children with chronic conditions in a statewide immunization registry.

PubMed

Dombkowski, Kevin J; Costello, Lauren; Dong, Shiming; Clark, Sarah J

2014-05-01

To demonstrate the feasibility and utility of using administrative claims data from commercial health plans to establish a high-risk indicator in a statewide immunization registry for enrollees with chronic conditions. Retrospective cohort analysis. Administrative data were used to identify children with 1 or more chronic conditions enrolled in 2 commercial health plans during the 2008-2009 and 2009-2010 influenza seasons and matched with a statewide immunization registry. The proportion of cases that successfully matched and historical health services utilization, including influenza vaccinations and missed opportunities, were assessed. A total of 93% of children with chronic conditions identified through administrative claims were successfully matched with the statewide registry. Less than one-third of children received the seasonal influenza vaccine in either the 2008-2009 (29%) or 2009-2010 (32%) seasons; 30% of children received the H1N1 vaccination in 2009-2010. Most children in the 2008-2009 (63%) and 2009-2010 (63%) seasons had at least 1 missed opportunity for seasonal influenza vaccination. Younger children had the highest percentage of missed opportunities while adolescents had the lowest rate of missed opportunities for vaccination. Conclusions It is feasible to identify children with chronic conditions using administrative data and to link them with a statewide immunization registry. Low influenza vaccination rates and high occurrences of missed opportunities among children with chronic conditions suggest the utility of integrating administrative claims data with statewide registries to support various outreach mechanisms, including physician-focused and parent-targeted reminder/recall, based on target age to improve vaccination rates.

The Mexican Acromegaly Registry: Clinical and Biochemical Characteristics at Diagnosis and Therapeutic Outcomes.

PubMed

Portocarrero-Ortiz, Lesly A; Vergara-Lopez, Alma; Vidrio-Velazquez, Maricela; Uribe-Diaz, Ana María; García-Dominguez, Avril; Reza-Albarrán, Alfredo Adolfo; Cuevas-Ramos, Daniel; Melgar, Virgilio; Talavera, Juan; Rivera-Hernandez, Aleida de Jesus; Valencia-Méndez, Carla Valentina; Mercado, Moisés

2016-11-01

Acromegaly is a systemic disorder caused by a GH-secreting pituitary adenoma. As with other rare diseases, acromegaly registries developed in various European countries have provided us with important information. The objective of the study was to analyze the epidemiological, clinical, biochemical, and therapeutic data from the Mexican Acromegaly Registry (MAR). The setting of the study was a nationwide patient registry. The MAR was created in 2009. It gathers data from 24 participating centers belonging to three different institutions using a specifically designed on-line platform. Only patients diagnosed after 1990 were included in the program. A total of 2057 patients (51% female, mean age at diagnosis 41.1 ± 24.5 y) have been registered for an estimated prevalence of 18 cases per 1 million inhabitants. Hypertension, glucose intolerance, diabetes, and dyslipidemia were present in 27%, 18.4%, 30%, and 24% of the patients, respectively. The IGF-1 level at diagnosis and the concomitant presence of hypertension were significantly associated with the development of diabetes. Transsphenoidal surgery was the primary treatment in 72% of the patients. Pharmacological treatment, mostly with somatostatin analogs, was administered primarily and adjunctively in 26% and 54% of the patients, respectively. Treatment choice varied among the three participating institutions, with the predominance of pharmacological therapy in two of them and of radiation therapy in the third. Therapeutic outcomes were similar to those reported in the European registries. The MAR is the largest and first non-European registry of the disease. Our findings highlight important within-country differences in treatment choice due to variations in the availability of resources.

Evaluation of the sensitivity of the 'Wiley registry of tandem mass spectral data, MSforID' with MS/MS data of the 'NIST/NIH/EPA mass spectral library'.

PubMed

Oberacher, Herbert; Whitley, Graeme; Berger, Bernd

2013-04-01

Tandem mass spectral libraries are versatile tools for small molecular identification finding application in forensic science, doping control, drug monitoring, food and environmental analysis, as well as metabolomics. Two important libraries are the 'Wiley Registry of Tandem Mass Spectral Data, MSforID' (Wiley Registry MSMS) and the collection of MS/MS spectra part of the 2011 edition of the 'NIST/NIH/EPA Mass Spectral Library' (NIST 11 MSMS). Herein, the sensitivity and robustness of the Wiley Registry MSMS were evaluated using spectra extracted from the NIST 11 MSMS library. The sample set was found to be heterogeneous in terms of mass spectral resolution, type of CID, as well as applied collision energies. Nevertheless, sensitive compound identification with a true positive identification rate ≥95% was possible using either the MSforID Search program or the NIST MS Search program 2.0g for matching. To rate the performance of the Wiley Registry MSMS, cross-validation experiments were repeated using subcollections of NIST 11 MSMS as reference library and spectra extracted from the Wiley Registry MSMS as positive controls. Unexpectedly, with both search algorithms tested, correct results were obtained in less than 88% of cases. We examined possible causes for the results of the cross validation study. The large number of precursor ions represented by a single tandem mass spectrum only was identified as the basic cause for the comparably lower sensitivity of the NIST library. Copyright © 2013 John Wiley & Sons, Ltd.

Central Diabetes Insipidus: A Previously Unreported Side Effect of Temozolomide

PubMed Central

Nachtigall, Lisa; Wexler, Deborah; Miller, Karen K.; Klibanski, Anne; Makimura, Hideo

2013-01-01

Context: Temozolomide (TMZ) is an alkylating agent primarily used to treat tumors of the central nervous system. We describe 2 patients with apparent TMZ-induced central diabetes insipidus. Using our institution's Research Patient Database Registry, we identified 3 additional potential cases of TMZ-induced diabetes insipidus among a group of 1545 patients treated with TMZ. Case Presentations: A 53-year-old male with an oligoastrocytoma and a 38-year-old male with an oligodendroglioma each developed symptoms of polydipsia and polyuria approximately 2 months after the initiation of TMZ. Laboratory analyses demonstrated hypernatremia and urinary concentrating defects, consistent with the presence of diabetes insipidus, and the patients were successfully treated with desmopressin acetate. Desmopressin acetate was withdrawn after the discontinuation of TMZ, and diabetes insipidus did not recur. Magnetic resonance imaging of the pituitary and hypothalamus was unremarkable apart from the absence of a posterior pituitary bright spot in both of the cases. Anterior pituitary function tests were normal in both cases. Using the Research Patient Database Registry database, we identified the 2 index cases and 3 additional potential cases of diabetes insipidus for an estimated prevalence of 0.3% (5 cases of diabetes insipidus per 1545 patients prescribed TMZ). Conclusions: Central diabetes insipidus is a rare but reversible side effect of treatment with TMZ. PMID:23928668

Rare malignant pediatric tumors registered in the German Childhood Cancer Registry 2001-2010.

PubMed

Brecht, Ines B; Bremensdorfer, Claudia; Schneider, Dominik T; Frühwald, Michael C; Offenmüller, Sonja; Mertens, Rolf; Vorwerk, Peter; Koscielniak, Ewa; Bielack, Stefan S; Benesch, Martin; Hero, Barbara; Graf, Norbert; von Schweinitz, Dietrich; Kaatsch, Peter

2014-07-01

The German Childhood Cancer Registry (GCCR) annually registers approximately 2,000 children diagnosed with a malignant disease (completeness of registration >95%). While most pediatric cancer patients are diagnosed and treated according to standardized cooperative protocols of the German Society for Pediatric Oncology and Hematology (GPOH), patients with rare tumors are at risk of not being integrated in the network including trials and reference centers. A retrospective analysis of all rare extracranial solid tumors reported to the GCCR 2001-2010 (age <18 years) was undertaken using a combination of the International Classification of Childhood Cancer (ICCC-3) and the International Classification of Diseases-Oncology (ICD-O-3). Tumors accounting for <0.3% of all malignancies were defined as rare (approx. 6 cases/year and registered malignancy). According to this definition 1,189 rare extracranial solid tumors (18.2% of all malignant extracranial solid tumors) were registered, among these 232 patients (19.5% of rare tumor cases), were not included in preexisting GPOH studies/registries. Within 10 years, the number of registered non-GPOH-trial patients with a rare tumor increased. Though most of the GCCR-registered patients with rare malignant tumors are treated within GPOH trials, there is a considerable number of patients that have been diagnosed and treated outside the structures of the GPOH. These patients should be reported to the recently founded German Pediatric Rare Tumor Registry (STEP). Active data accrual and the development of appropriate structures will allow for better registration and improvement of medical care in these patients. © 2014 Wiley Periodicals, Inc.

The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration.

PubMed

Taruscio, Domenica; Mollo, Emanuela; Gainotti, Sabina; Posada de la Paz, Manuel; Bianchi, Fabrizio; Vittozzi, Luciano

2014-01-01

The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve standardization and data comparability among patient registries and to support new registries and data collections. A reference list of patient registry-based indicators has been prepared building on the work of previous EU projects and on the platform stakeholders' information needs resulting from the EPIRARE surveys and consultations. The variables necessary to compute these indicators have been analysed for their scope and use and then organized in data domains. The reference indicators span from disease surveillance, to socio-economic burden, HS monitoring, research and product development, policy equity and effectiveness. The variables necessary to compute these reference indicators have been selected and, with the exception of more sophisticated indicators for research and clinical care quality, they can be collected as data elements common (CDE) to all rare diseases. They have been organized in data domains characterized by their contents and main goal and a limited set of mandatory data elements has been defined, which allows case notification independently of the physician or the health service. The definition of a set of CDE for the European platform for RD patient registration is the first step in the promotion of the use of common tools for the collection of comparable data. The proposed organization of the CDE contributes to the completeness of case ascertainment, with the possible involvement of patients and patient associations in the registration process.

Accuracy of a state immunization registry in the pediatric emergency department.

PubMed

Stecher, Dawn S; Adelman, Raymond; Brinkman, Traci; Bulloch, Blake

2008-02-01

The purpose of this study was to ascertain whether either parental recall or a state immunization registry was as accurate as the medical record in determining immunization status in the emergency department (ED). A convenience sample of children younger than 5 years who presented to the ED between July 2004 and May 2005 were enrolled prospectively. After obtaining informed consent, parents were asked about their child's immunization status. All children then had their immunization data accessed in the Arizona State Immunization Information System. The information obtained from the state registry, as well as the information from the parental interview, was then compared with the information on the medical record obtained from the primary care physician (PCP). Data were analyzed using simple descriptive statistics. A total of 332 children were enrolled in the study. A total of 302 (91%) children enrolled were found in the state database, and 222 (74%) of these had a medical record available for comparison. The database agreed with the PCP record in 130 (59%) cases; parental report agreed with the PCP record in 149 (62%) cases. Although most children can be found in the state immunization registry, it seems to be similar in accuracy to parental recall of immunization status when each is compared with the medical record. This may have been due to either underreporting of immunizations from the community or a delay in updating the state database. At this time, neither parental recall nor the database would accurately determine a child's immunization status during an ED visit.

Paternal lineage early onset hereditary ovarian cancers: A Familial Ovarian Cancer Registry study.

PubMed

Eng, Kevin H; Szender, J Brian; Etter, John Lewis; Kaur, Jasmine; Poblete, Samantha; Huang, Ruea-Yea; Zhu, Qianqian; Grzesik, Katherine A; Battaglia, Sebastiano; Cannioto, Rikki; Krolewski, John J; Zsiros, Emese; Frederick, Peter J; Lele, Shashikant B; Moysich, Kirsten B; Odunsi, Kunle O

2018-02-01

Given prior evidence that an affected woman conveys a higher risk of ovarian cancer to her sister than to her mother, we hypothesized that there exists an X-linked variant evidenced by transmission to a woman from her paternal grandmother via her father. We ascertained 3,499 grandmother/granddaughter pairs from the Familial Ovarian Cancer Registry at the Roswell Park Cancer Institute observing 892 informative pairs with 157 affected granddaughters. We performed germline X-chromosome exome sequencing on 186 women with ovarian cancer from the registry. The rate of cancers was 28.4% in paternal grandmother/granddaughter pairs and 13.9% in maternal pairs consistent with an X-linked dominant model (Chi-square test X2 = 0.02, p = 0.89) and inconsistent with an autosomal dominant model (X2 = 20.4, p<0.001). Paternal grandmother cases had an earlier age-of-onset versus maternal cases (hazard ratio HR = 1.59, 95%CI: 1.12-2.25) independent of BRCA1/2 status. Reinforcing the X-linked hypothesis, we observed an association between prostate cancer in men and ovarian cancer in his mother and daughters (odds ratio, OR = 2.34, p = 0.034). Unaffected mothers with affected daughters produced significantly more daughters than sons (ratio = 1.96, p<0.005). We performed exome sequencing in reported BRCA negative cases from the registry. Considering age-of-onset, one missense variant (rs176026 in MAGEC3) reached chromosome-wide significance (Hazard ratio HR = 2.85, 95%CI: 1.75-4.65) advancing the age of onset by 6.7 years. In addition to the well-known contribution of BRCA, we demonstrate that a genetic locus on the X-chromosome contributes to ovarian cancer risk. An X-linked pattern of inheritance has implications for genetic risk stratification. Women with an affected paternal grandmother and sisters of affected women are at increased risk for ovarian cancer. Further work is required to validate this variant and to characterize carrier families.

Paternal lineage early onset hereditary ovarian cancers: A Familial Ovarian Cancer Registry study

PubMed Central

Eng, Kevin H.; Szender, J. Brian; Etter, John Lewis; Kaur, Jasmine; Poblete, Samantha; Huang, Ruea-Yea; Zhu, Qianqian; Battaglia, Sebastiano; Cannioto, Rikki; Krolewski, John J.; Zsiros, Emese; Frederick, Peter J.; Lele, Shashikant B.; Moysich, Kirsten B.; Odunsi, Kunle O.

2018-01-01

Given prior evidence that an affected woman conveys a higher risk of ovarian cancer to her sister than to her mother, we hypothesized that there exists an X-linked variant evidenced by transmission to a woman from her paternal grandmother via her father. We ascertained 3,499 grandmother/granddaughter pairs from the Familial Ovarian Cancer Registry at the Roswell Park Cancer Institute observing 892 informative pairs with 157 affected granddaughters. We performed germline X-chromosome exome sequencing on 186 women with ovarian cancer from the registry. The rate of cancers was 28.4% in paternal grandmother/granddaughter pairs and 13.9% in maternal pairs consistent with an X-linked dominant model (Chi-square test X2 = 0.02, p = 0.89) and inconsistent with an autosomal dominant model (X2 = 20.4, p<0.001). Paternal grandmother cases had an earlier age-of-onset versus maternal cases (hazard ratio HR = 1.59, 95%CI: 1.12–2.25) independent of BRCA1/2 status. Reinforcing the X-linked hypothesis, we observed an association between prostate cancer in men and ovarian cancer in his mother and daughters (odds ratio, OR = 2.34, p = 0.034). Unaffected mothers with affected daughters produced significantly more daughters than sons (ratio = 1.96, p<0.005). We performed exome sequencing in reported BRCA negative cases from the registry. Considering age-of-onset, one missense variant (rs176026 in MAGEC3) reached chromosome-wide significance (Hazard ratio HR = 2.85, 95%CI: 1.75–4.65) advancing the age of onset by 6.7 years. In addition to the well-known contribution of BRCA, we demonstrate that a genetic locus on the X-chromosome contributes to ovarian cancer risk. An X-linked pattern of inheritance has implications for genetic risk stratification. Women with an affected paternal grandmother and sisters of affected women are at increased risk for ovarian cancer. Further work is required to validate this variant and to characterize carrier families. PMID:29447163

Procedural Experience for Transcatheter Aortic Valve Replacement and Relation to Outcomes: The STS/ACC TVT Registry.

PubMed

Carroll, John D; Vemulapalli, Sreekanth; Dai, Dadi; Matsouaka, Roland; Blackstone, Eugene; Edwards, Fred; Masoudi, Frederick A; Mack, Michael; Peterson, Eric D; Holmes, David; Rumsfeld, John S; Tuzcu, E Murat; Grover, Frederick

2017-07-04

Transcatheter aortic valve replacement (TAVR) has been introduced into U.S. clinical practice with efforts to optimize outcomes and minimize the learning curve. The goal of this study was to assess the degree to which increasing experience during the introduction of this procedure, separated from other outcome determinants including patient and procedural characteristics, is associated with outcomes. The authors evaluated the association of hospital TAVR volume and patient outcomes for TAVR by using data from 42,988 commercial procedures conducted at 395 hospitals submitting to the Transcatheter Valve Therapy Registry from 2011 through 2015. Outcomes assessed included adjusted and unadjusted in-hospital major adverse events. Increasing site volume was associated with lower in-hospital risk-adjusted outcomes, including mortality (p < 0.02), vascular complications (p < 0.003), and bleeding (p < 0.001) but was not associated with stroke (p = 0.14). From the first case to the 400th case in the volume-outcome model, risk-adjusted adverse outcomes declined, including mortality (3.57% to 2.15%), bleeding (9.56% to 5.08%), vascular complications (6.11% to 4.20%), and stroke (2.03% to 1.66%). Vascular and bleeding volume-outcome associations were nonlinear with a higher risk of adverse outcomes in the first 100 cases. An association of procedure volume with risk-adjusted outcomes was also seen in the subgroup having transfemoral access. The initial adoption of TAVR into practice in the United States showed that increasing experience was associated with better outcomes. This association, whether deemed a prolonged learning curve or a manifestation of a volume-outcome relationship, suggested that concentrating experience in higher volume heart valve centers might be a means of improving outcomes. (STS/ACC Transcatheter Valve Therapy Registry [TVT Registry]; NCT01737528). Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Genetics Home Reference: hereditary angioedema

MedlinePlus

... 000 people. Type I is the most common, accounting for 85 percent of cases. Type II occurs ... be inherited? More about Inheriting Genetic Conditions Diagnosis & Management Resources Genetic Testing (3 links) Genetic Testing Registry: ...

Genetics Home Reference: multiminicore disease

MedlinePlus

... are less common than the classic form, together accounting for about 25 percent of all cases. The ... be inherited? More about Inheriting Genetic Conditions Diagnosis & Management Resources Genetic Testing (5 links) Genetic Testing Registry: ...

A new data management system for the French National Registry of human alveolar echinococcosis cases.

PubMed

Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

2014-01-01

Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. © A. Charbonnier et al., published by EDP Sciences, 2014.

A new data management system for the French National Registry of human alveolar echinococcosis cases

PubMed Central

Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

2014-01-01

Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. PMID:25526544

Addressing a community's cancer cluster concerns

PubMed Central

Gavin, AT; Catney, D

2006-01-01

The felling of a telecommunications mast highlighted a community's concern regarding an alleged cancer cluster of eleven cases in a small rural area of Northern Ireland. At the request of the Local District Council, the Northern Ireland Cancer Registry (NICR) undertook an investigation. After extensive searching and contact with the community, only 6 of the alleged cases could be identified. Of these six, two did not have cancer and one had a non-malignant tumour. In addition to the three confirmed cancer cases, a search of the NICR database identified a further 17 cancers of mixed types in keeping with the population pattern of cancers. Standardised incidence and mortality rates were within, or lower than, the expected level. The results were presented to the local community at an open meeting. Despite extensive media interest when the issue of the alleged cluster was first raised, the negative findings received only local media attention. This study illustrates the value of an accurate population cancer registry in addressing cancer cluster concerns. PMID:16964811

Data Type Registry - Cross Road Between Catalogs, Data And Semantics

NASA Astrophysics Data System (ADS)

Richard, S. M.; Zaslavsky, I.; Bristol, S.

2017-12-01

As more data become accessible online, the opportunity is increasing to improve search for information within datasets and for automating some levels of data integration. A prerequisite for these advances is indexing the kinds of information that are present in datasets and providing machine actionable descriptions of data structures. We are exploring approaches to enabling these capabilities in the EarthCube DigitalCrust and Data Discovery Hub Building Block projects, building on the Data type registry (DTR) workgroup activity in the Research Data Alliance. We are prototyping a registry implementation using the CNRI Cordra platform and API to enable 'deep registration' of datasets for building hydrogeologic models of the Earth's Crust, and executing complex science scenarios for river chemistry and coral bleaching data. These use cases require the ability to respond to queries such as: What are properties of Entity X; What entities include property Y (or L, M, N…), and What DataTypes are about Entity X and include property Y. Development of the registry to enable these capabilities requires more in-depth metadata than is commonly available, so we are also exploring approaches to analyzing simple tabular data to automate recognition of entities and properties, and assist users with establishing semantic mappings to data integration vocabularies. This poster will review the current capabilities and implementation of a data type registry.

Adoption of the Hash algorithm in a conceptual model for the civil registry of Ecuador

NASA Astrophysics Data System (ADS)

Toapanta, Moisés; Mafla, Enrique; Orizaga, Antonio

2018-04-01

The Hash security algorithm was analyzed in order to mitigate information security in a distributed architecture. The objective of this research is to develop a prototype for the Adoption of the algorithm Hash in a conceptual model for the Civil Registry of Ecuador. The deductive method was used in order to analyze the published articles that have a direct relation with the research project "Algorithms and Security Protocols for the Civil Registry of Ecuador" and articles related to the Hash security algorithm. It resulted from this research: That the SHA-1 security algorithm is appropriate for use in Ecuador's civil registry; we adopted the SHA-1 algorithm used in the flowchart technique and finally we obtained the adoption of the hash algorithm in a conceptual model. It is concluded that from the comparison of the DM5 and SHA-1 algorithm, it is suggested that in the case of an implementation, the SHA-1 algorithm is taken due to the amount of information and data available from the Civil Registry of Ecuador; It is determined that the SHA-1 algorithm that was defined using the flowchart technique can be modified according to the requirements of each institution; the model for adopting the hash algorithm in a conceptual model is a prototype that can be modified according to all the actors that make up each organization.

Respiratory distress syndrome in preterm infants and risk of epilepsy in a Danish cohort.

PubMed

Thygesen, Sandra Kruchov; Olsen, Morten; Pedersen, Lars; Henderson, Victor W; Østergaard, John Rosendahl; Sørensen, Henrik Toft

2018-03-01

Infant respiratory distress syndrome (IRDS) may be complicated by intracerebral hemorrhage, a known trigger of epilepsy. However, few data exist on long term epilepsy risk following IRDS. We therefore examined the association between IRDS in preterm infants and childhood epilepsy. We conducted a population-based cohort study using individual-level data linkage among nationwide registries. All infants born at 32-36 weeks of gestation in 1978-2009 were identified in the Medical Birth Registry. We identified children with IRDS and those with epilepsy using the Danish National Patient Registry. We computed the cumulative incidence of epilepsy with follow-up from birth until epilepsy, emigration, death, age 15, or December 31, 2014. We used Cox's regression analysis to compute hazard ratios comparing children with and without IRDS, adjusting for sex, birth year, gestational age, multiplicity, major malformations, and maternal age. We identified 95,026 infants, of whom 6426 (6.8%) had IRDS. The cumulative incidence of epilepsy was 3.4% by age 15 in children with IRDS and 2.1% in children without IRDS. The adjusted hazard ratio of epilepsy among children with IRDS compared to those without was 1.4 (95% CI 1.2-1.6). When we restricted the IRDS cohort to children with no simultaneous morbidities that had clinical symptoms overlapping with IRDS, the overall adjusted HR was 1.1 (95% CI 0.9-1.4). In children born preterm at 32-36 weeks' gestation, IRDS was associated with increased risk of childhood epilepsy.

[Incidence and mortality of cervical cancer in China, 2014].

PubMed

Gu, X Y; Zheng, R S; Sun, K X; Zhang, S W; Zeng, H M; Zou, X N; Chen, W Q; He, J

2018-04-23

Objective: To estimate the incidence and mortality of cervical cancer in China based on the cancer registry data in 2014, collected by the National Central Cancer Registry (NCCR). Methods: There were 449 cancer registries submitted cervical cancer incidence and deaths in 2014 to NCCR. After evaluating the data quality, 339 registries' data were accepted for analysis and stratified by areas (urban/rural) and age group. Combined with data on national population in 2014, the nationwide incidence and mortality of cervical cancer were estimated. Chinese population census in 2000 and Segi's population were used for age-standardized incidence/mortality rates. Results: Qualified 339 cancer registries covered a total of 288 243 347 populations (144 061 915 in urban and 144 181 432 in rural areas). The percentage of morphologically verified cases and death certificate-only cases were 86.07% and 1.01%, respectively. The mortality to incidence ratio was 0.30. The estimates of new cases were about 102 000 in China in 2014, with a crude incidence rate of 15.30/100 000. The age-standardized incidence rates by China standard population (ASR China) and world standard population (ASR world) of cervical cancer were 11.57/100 000 and 10.61/100 000, respectively. Cumulative incidence rate of cervical cancer in China was 1.11%. The crude and ASR China incidence rates in urban areas were 15.27/100 000 and 11.16/100 000, respectively, whereas those were 15.34/100 000 and 12.14/100 000 in rural areas. The estimates of cervical cancer deaths were about 30 400 in China in 2014, with a crude mortality rate of 4.57/100 000. The ASR China and ASR world mortality rates were 3.12/100 000 and 2.98/100 000, respectively, with a cumulative mortality rate (0-74 years old) of 0.33%. The crude and ASR China mortality rates were 4.44/100 000 and 2.92/100 000 in urban areas, respectively, whereas those were 4.72/100 000 and 3.39/100 000 in rural areas. Conclusions: There is still a heavy burden of cervical cancer in China. The burden and patterns of cervical cancer shows different characters of urban and rural people. Prevention and control strategies should be implemented referring to local status.

Genetics Home Reference: Paget disease of bone

MedlinePlus

... genetic cause of classic Paget disease of bone , accounting for 10 to 50 percent of cases that ... be inherited? More about Inheriting Genetic Conditions Diagnosis & Management Resources Genetic Testing (6 links) Genetic Testing Registry: ...

Bridging the gap between the randomised clinical trial world and the real world by combination of population-based registry and electronic health record data: A case study in haemato-oncology.

PubMed

Kibbelaar, R E; Oortgiesen, B E; van der Wal-Oost, A M; Boslooper, K; Coebergh, J W; Veeger, N J G M; Joosten, P; Storm, H; van Roon, E N; Hoogendoorn, M

2017-11-01

Randomised clinical trials (RCTs) are considered the basis of evidence-based medicine. It is recognised more and more that application of RCT results in daily practice of clinical decision-making is limited because the RCT world does not correspond with the clinical real world. Recent strategies aiming at substitution of RCT databases by improved population-based registries (PBRs) or by improved electronic health record (EHR) systems to provide significant data for clinical science are discussed. A novel approach exemplified by the HemoBase haemato-oncology project is presented. In this approach, a PBR is combined with an advanced EHR, providing high-quality data for observational studies and support of best practice development. This PBR + EHR approach opens a perspective on randomised registry trials. Copyright © 2017 Elsevier Ltd. All rights reserved.

Alcohol and Drug-Related Mortality among Enrollees in the World Trade Center Health Registry (WTCHR), 2004-12.

PubMed

Welch, Alice E; Zweig, Kimberly Caramanica; Liao, Tim; Yip, Jennifer; Davidson, Alexander; Jordan, Hannah; Brackbill, Robert; Cone, James

2018-06-13

Have World Trade Center Health Registry (WTCHR) enrollees experienced increased alcohol and drug-related mortality associated with exposures to the events of 9/11/01? Cases involving death due to alcohol or drugs between 2003 and 2012 in New York City (NYC) were obtained through a match of the Registry with NYC Vital Records. We compared ICD-10-coded deaths where alcohol and/or drug use was the underlying cause of death to deaths from all other causes. Of 1,193 deaths, 66 (5.5%) were alcohol/drug-related. Adjusted odds ratios for dying from alcohol/drug-related causes were significantly elevated for enrollees who were male, age 18-44 years, smoked at enrollment, had 9/11-related probable PTSD, were rescue/recovery workers, or sustained an injury on 9/11/01. Following a major disaster, alcohol and drug-related mortality may be increased.

Implementation of the trauma registry as a tool for quality improvement in trauma care in a brazilian hospital: the first 12 months.

PubMed

Parreira, José Gustavo; de Campos, Tércio; Perlingeiro, Jacqueline A Gianinni; Soldá, Silvia C; Assef, José Cesar; Gonçalves, Augusto Canton; Zuffo, Bruno Malteze; Floriano, Caio Gomes; de Oliveira, Erik Haruk; de Oliveira, Renato Vieira Rodrigues; Oliveira, Amanda Lima; de Melo, Caio Gullo; Below, Cristiano; Miranda, Dino R Pérez; Santos, Gabriella Colasuonno; de Almeida, Gabriele Madeira; Brianti, Isabela Campos; Votto, Karina Baruel de Camargo; Schues, Patrick Alexander Sauer; dos Santos, Rafael Gomes; de Figueredo, Sérgio Mazzola Poli; de Araujo, Tatiani Gonçalves; Santos, Bruna do Nascimento; Ferreira, Laura Cardoso Manduca; Tanaka, Giuliana Olivi; Matos, Thiara; da Sousa, Maria Daiana; Augusto, Samara de Souza

2015-01-01

to analyze the implementation of a trauma registry in a university teaching hospital delivering care under the unified health system (SUS), and its ability to identify points for improvement in the quality of care provided. the data collection group comprised students from medicine and nursing courses who were holders of FAPESP scholarships (technical training 1) or otherwise, overseen by the coordinators of the project. The itreg (ECO Sistemas-RJ/SBAIT) software was used as the database tool. Several quality "filters" were proposed to select those cases for review in the quality control process. data for 1344 trauma patients were input to the itreg database between March and November 2014. Around 87.0% of cases were blunt trauma patients, 59.6% had RTS>7.0 and 67% ISS<9. Full records were available for 292 cases, which were selected for review in the quality program. The auditing filters most frequently registered were laparotomy four hours after admission and drainage of acute subdural hematomas four hours after admission. Several points for improvement were flagged, such as control of overtriage of patients, the need to reduce the number of negative imaging exams, the development of protocols for achieving central venous access, and management of major TBI. the trauma registry provides a clear picture of the points to be improved in trauma patient care, however, there are specific peculiarities for implementing this tool in the Brazilian milieu.

Cancer incidence and mortality in China, 2013.

PubMed

Chen, Wanqing; Zheng, Rongshou; Zhang, Siwei; Zeng, Hongmei; Xia, Changfa; Zuo, Tingting; Yang, Zhixun; Zou, Xiaonong; He, Jie

2017-08-10

National Central Cancer Registry of China (NCCRC) updated nationwide statistics of cancer incidence and mortality in China using population-based cancer registration data in 2013 from all available cancer registries. In 2016, 255 registries' data were qualified and included in this analysis. We estimated numbers of new cancer cases and deaths in China in 2013 using age-specific rates and corresponding national population stratified by area, sex, age group (0, 1-4, 5-9, 10-14…85+) and cancer type. The world Segi's population was applied for age-standardized rates. All rates were expressed per 100,000 person-year. A total of 3,682,000 new cancer cases and 2,229,300 cancer deaths were estimated in China in 2013. Cancers of lung, female breast, stomach, liver, colon-rectum and esophagus were the most common cancers, accounting for about half of all cancer new cases. Lung cancer, liver cancer, stomach cancer, esophageal cancer, colorectal cancer were the five leading causes of cancer death, accounting for about 60% of all cancer deaths. The cancer patterns showed differences not only between male and female, but also among different geographic regions in China. For overall cancers, the age-standardized incidence rates were stable during the past decades in male, but significantly increased by 2.2% per year in female. Cancer poses a major threat to public health and the cancer burden keep raising in China. The annual updated cancer statistics can provide scientific basis for cancer prevention and control. Copyright © 2017. Published by Elsevier B.V.

Converging endometrial and ovarian tumorigenesis in Lynch syndrome: Shared origin of synchronous carcinomas.

PubMed

Niskakoski, Anni; Pasanen, Annukka; Porkka, Noora; Eldfors, Samuli; Lassus, Heini; Renkonen-Sinisalo, Laura; Kaur, Sippy; Mecklin, Jukka-Pekka; Bützow, Ralf; Peltomäki, Päivi

2018-04-28

The diagnosis of carcinoma in both the uterus and the ovary simultaneously is not uncommon and raises the question of synchronous primaries vs. metastatic disease. Targeted sequencing of sporadic synchronous endometrial and ovarian carcinomas has shown that such tumors are clonally related and thus represent metastatic disease from one site to the other. Our purpose was to investigate whether or not the same applies to Lynch syndrome (LS), in which synchronous cancers of the gynecological tract are twice as frequent as in sporadic cases, reflecting inherited defects in DNA mismatch repair (MMR). MMR gene mutation carriers with endometrial or ovarian carcinoma or endometrial hyperplasia were identified from a nationwide registry. Endometrial (n = 35) and ovarian carcinomas (n = 23), including 13 synchronous carcinoma pairs, were collected as well as endometrial hyperplasias (n = 56) and normal endometria (n = 99) from a surveillance program over two decades. All samples were studied for MMR status, ARID1A and L1CAM protein expression and tumor suppressor gene promoter methylation, and synchronous carcinomas additionally for somatic mutation profiles of 578 cancer-relevant genes. Synchronous carcinomas were molecularly concordant in all cases. Prior or concurrent complex (but not simple) endometrial hyperplasias showed a high degree of concordance with endometrial or ovarian carcinoma as the endpoint lesion. Our investigation suggests shared origins for synchronous endometrial and ovarian carcinomas in LS, in analogy to sporadic cases. The similar degrees of concordance between complex hyperplasias and endometrial vs. ovarian carcinoma highlight converging pathways for endometrial and ovarian tumorigenesis overall. Copyright © 2018. Published by Elsevier Inc.

The Prevalence of Congenital Hand and Upper Extremity Anomalies Based Upon the New York Congenital Malformations Registry.

PubMed

Goldfarb, Charles A; Shaw, Neil; Steffen, Jennifer A; Wall, Lindley B

2017-03-01

There have been few publications regarding the prevalence of congenital upper extremity anomalies and no recent reports from the United States. The purpose of this investigation was to examine the prevalence of congenital upper extremity anomalies in the total birth population of New York State over a 19-year period utilizing the New York Congenital Malformations Registry (NYCMR) database. The NYCMR includes children with at least 1 birth anomaly diagnosed by 2 years of age and listed by diagnosis code. We scrutinized these codes for specific upper extremity anomalies, including polydactyly, syndactyly, reduction defects, clubhand malformations, and syndromes with upper limb anomalies. We included children born between 1992 and 2010. There were a total of 4,883,072 live births in New York State during the study period. The overall prevalence of congenital upper extremity anomalies was 27.2 cases per 10,000 live births. Polydactyly was most common with 12,418 cases and a prevalence rate of 23.4 per 10,000 live births. The next most common anomalies included syndactyly with 627 cases affecting the hands (1498 total) and reduction defects (1111 cases). Specific syndromes were quite rare and were noted in a total of 215 live births. The prevalence of anomalies was higher in New York City compared with New York State populations at 33.0 and 21.9 per 10,000 live births, respectively. The NYCMR data demonstrate that congenital upper extremity anomalies are more common than previously reported. This is in large part due to the high prevalence of polydactyly. Although registries are imperfect, such data are helpful in monitoring prevalence rates over time, identifying potential causes or associations, and guiding health care planning and future research. Level I-diagnostic.

Health Care Cost Analysis in a Population-based Inception Cohort of Inflammatory Bowel Disease Patients in the First Year of Diagnosis.

PubMed

Niewiadomski, Olga; Studd, Corrie; Hair, Christopher; Wilson, Jarrad; McNeill, John; Knight, Ross; Prewett, Emily; Dabkowski, Paul; Dowling, Damian; Alexander, Sina; Allen, Benjamin; Tacey, Mark; Connell, William; Desmond, Paul; Bell, Sally

2015-11-01

There are limited prospective population-based data on the health care cost of IBD in the post-biologicals era. A prospective registry that included all incident cases of inflammatory bowel disease [IBD] was established to study disease progress and health cost. To prospectively assess health care costs in the first year of diagnosis among a well-characterised cohort of newly diagnosed IBD patients. Incident cases of IBD were prospectively identified in 2007-2008 and 2010-2013 from multiple health care providers, and enrolled into the population-based registry. Health care resource utilisation for each patient was collected through active surveillance of case notes and investigations including specialist visits, diagnostic tests, medications, medical hospitalisation, and surgery. Off 276 incident cases of IBD, 252 [91%] were recruited to the registry, and health care cost was calculated for 242 (146 Crohn's disease [CD] and 96 ulcerative colitis [UC] patients). The median cost in CD was higher at A$5905 per patient (interquartile range [IQR]: A$1571-$91,324) than in UC at A$4752 [IQR: A$1488-A$58,072]. In CD, outpatient resources made up 55% of all cost, with medications accounting for 32% of total cost [15% aminosalicylates, 15% biological therapy], followed by surgery [31%], and diagnostic testing [21%]. In UC, medications accounted for 39% of total cost [of which 37% was due to 5-aminosalicylates, and diagnostics 29%; outpatient cost contributed 71% to total cost. In the first year of diagnosis, outpatient resources account for the majority of cost in both CD and UC. Medications are the main cost driver in IBD. Copyright © 2015 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.

The descriptive epidemiology of gastric cancer in Central America and comparison with United States Hispanic populations.

PubMed

Corral, Juan E; Delgado Hurtado, Juan J; Domínguez, Ricardo L; Valdez de Cuéllar, Marisabel; Balmore Cruz, Carlos; Morgan, Douglas R

2015-03-01

The aims of this study were to delineate the epidemiology of gastric adenocarcinoma in Central America and contrast it with Hispanic-Latino populations in the USA. Published literature and Central America Ministry of Health databases were used as primary data sources, including national, population-based, and hospital-based registries. US data was obtained from the National Cancer Institute (NCI)-Epidemiology End Results Program (SEER) registry. Incident gastric adenocarcinoma cases were analyzed for available data between 1985 and 2011, including demographic variables and pathology information. In Central America, 19,741 incident gastric adenocarcinomas were identified. Two thirds of the cases were male, 20.5 % were under age 55, and 58.5 %were from rural areas. In the SEER database (n = 7871), 57.8 % were male and 28.9 % were under age 55. Among the US Hispanics born in Central America with gastric cancer (n = 1210), 50.3 % of cases were male and 38.1 % were under age 55. Non-cardia gastric cancer was more common in Central America (83.3 %), among US Hispanics (80.2 %), and Hispanics born in Central America (86.3 %). Cancers of the antrum were more common in Central America (73.6 %), whereas cancers of the corpus were slightly more common among US Hispanics (54.0 %). Adenocarcinoma of the diffuse subtype was relatively common, both in Central America (35.7 %) and US Hispanics (69.5 %), although Lauren classification was reported in only 50 % of cases. A significant burden of gastric adenocarcinoma is observed in Central America based upon limited available data. Differences are noted between Central America and US Hispanics. Strengthening population-based registries is needed for improved cancer control in Central America, which may have implications for the growing US Hispanic population.

Central diabetes insipidus: a previously unreported side effect of temozolomide.

PubMed

Faje, Alexander T; Nachtigall, Lisa; Wexler, Deborah; Miller, Karen K; Klibanski, Anne; Makimura, Hideo

2013-10-01

Temozolomide (TMZ) is an alkylating agent primarily used to treat tumors of the central nervous system. We describe 2 patients with apparent TMZ-induced central diabetes insipidus. Using our institution's Research Patient Database Registry, we identified 3 additional potential cases of TMZ-induced diabetes insipidus among a group of 1545 patients treated with TMZ. A 53-year-old male with an oligoastrocytoma and a 38-year-old male with an oligodendroglioma each developed symptoms of polydipsia and polyuria approximately 2 months after the initiation of TMZ. Laboratory analyses demonstrated hypernatremia and urinary concentrating defects, consistent with the presence of diabetes insipidus, and the patients were successfully treated with desmopressin acetate. Desmopressin acetate was withdrawn after the discontinuation of TMZ, and diabetes insipidus did not recur. Magnetic resonance imaging of the pituitary and hypothalamus was unremarkable apart from the absence of a posterior pituitary bright spot in both of the cases. Anterior pituitary function tests were normal in both cases. Using the Research Patient Database Registry database, we identified the 2 index cases and 3 additional potential cases of diabetes insipidus for an estimated prevalence of 0.3% (5 cases of diabetes insipidus per 1545 patients prescribed TMZ). Central diabetes insipidus is a rare but reversible side effect of treatment with TMZ.

Development of a Web-based Glaucoma Registry at King Khaled Eye Specialist Hospital, Saudi Arabia: A Cost-Effective Methodology

PubMed Central

Zaman, Babar; Khandekar, Rajiv; Al Shahwan, Sami; Song, Jonathan; Al Jadaan, Ibrahim; Al Jiasim, Leyla; Owaydha, Ohood; Asghar, Nasira; Hijazi, Amar; Edward, Deepak P.

2014-01-01

In this brief communication, we present the steps used to establish a web-based congenital glaucoma registry at our institution. The contents of a case report form (CRF) were developed by a group of glaucoma subspecialists. Information Technology (IT) specialists used Lime Survey softwareTM to create an electronic CRF. A MY Structured Query Language (MySQL) server was used as a database with a virtual machine operating system. Two ophthalmologists and 2 IT specialists worked for 7 hours, and a biostatistician and a data registrar worked for 24 hours each to establish the electronic CRF. Using the CRF which was transferred to the Lime survey tool, and the MYSQL server application, data could be directly stored in spreadsheet programs that included Microsoft Excel, SPSS, and R-Language and queried in real-time. In a pilot test, clinical data from 80 patients with congenital glaucoma were entered into the registry and successful descriptive analysis and data entry validation was performed. A web-based disease registry was established in a short period of time in a cost-efficient manner using available resources and a team-based approach. PMID:24791112

Development of a web-based glaucoma registry at King Khaled Eye Specialist Hospital, Saudi Arabia: a cost-effective methodology.

PubMed

Zaman, Babar; Khandekar, Rajiv; Al Shahwan, Sami; Song, Jonathan; Al Jadaan, Ibrahim; Al Jiasim, Leyla; Owaydha, Ohood; Asghar, Nasira; Hijazi, Amar; Edward, Deepak P

2014-01-01

In this brief communication, we present the steps used to establish a web-based congenital glaucoma registry at our institution. The contents of a case report form (CRF) were developed by a group of glaucoma subspecialists. Information Technology (IT) specialists used Lime Survey softwareTM to create an electronic CRF. A MY Structured Query Language (MySQL) server was used as a database with a virtual machine operating system. Two ophthalmologists and 2 IT specialists worked for 7 hours, and a biostatistician and a data registrar worked for 24 hours each to establish the electronic CRF. Using the CRF which was transferred to the Lime survey tool, and the MYSQL server application, data could be directly stored in spreadsheet programs that included Microsoft Excel, SPSS, and R-Language and queried in real-time. In a pilot test, clinical data from 80 patients with congenital glaucoma were entered into the registry and successful descriptive analysis and data entry validation was performed. A web-based disease registry was established in a short period of time in a cost-efficient manner using available resources and a team-based approach.

Unified Modeling Language (UML) for hospital-based cancer registration processes.

PubMed

Shiki, Naomi; Ohno, Yuko; Fujii, Ayumi; Murata, Taizo; Matsumura, Yasushi

2008-01-01

Hospital-based cancer registry involves complex processing steps that span across multiple departments. In addition, management techniques and registration procedures differ depending on each medical facility. Establishing processes for hospital-based cancer registry requires clarifying specific functions and labor needed. In recent years, the business modeling technique, in which management evaluation is done by clearly spelling out processes and functions, has been applied to business process analysis. However, there are few analytical reports describing the applications of these concepts to medical-related work. In this study, we initially sought to model hospital-based cancer registration processes using the Unified Modeling Language (UML), to clarify functions. The object of this study was the cancer registry of Osaka University Hospital. We organized the hospital-based cancer registration processes based on interview and observational surveys, and produced an As-Is model using activity, use-case, and class diagrams. After drafting every UML model, it was fed-back to practitioners to check its validity and improved. We were able to define the workflow for each department using activity diagrams. In addition, by using use-case diagrams we were able to classify each department within the hospital as a system, and thereby specify the core processes and staff that were responsible for each department. The class diagrams were effective in systematically organizing the information to be used for hospital-based cancer registries. Using UML modeling, hospital-based cancer registration processes were broadly classified into three separate processes, namely, registration tasks, quality control, and filing data. An additional 14 functions were also extracted. Many tasks take place within the hospital-based cancer registry office, but the process of providing information spans across multiple departments. Moreover, additional tasks were required in comparison to using a standardized system because the hospital-based cancer registration system was constructed with the pre-existing computer system in Osaka University Hospital. Difficulty of utilization of useful information for cancer registration processes was shown to increase the task workload. By using UML, we were able to clarify functions and extract the typical processes for a hospital-based cancer registry. Modeling can provide a basis of process analysis for establishment of efficient hospital-based cancer registration processes in each institute.

Database structure for the Laser Accident and Incident Registry (LAIR)

NASA Astrophysics Data System (ADS)

Ness, James W.; Hoxie, Stephen W.; Zwick, Harry; Stuck, Bruce E.; Lund, David J.; Schmeisser, Elmar T.

1997-05-01

The ubiquity of laser radiation in military, medical, entertainment, telecommunications and research industries and the significant risk, of eye injury from this radiation are firmly established. While important advances have been made in understanding laser bioeffects using animal analogues and clinical data, the relationships among patient characteristics, exposure conditions, severity of the resulting injury, and visual function are fragmented, complex and varied. Although accident cases are minimized through laser safety regulations and control procedures, accumulated accident case information by the laser eye injury evaluation center warranted the development of a laser accident and incident registry. The registry includes clinical data for validating and refining hypotheses on injury and recovery mechanisms; a means for analyzing mechanisms unique to human injury; and a means for identifying future areas of investigation. The relational database supports three major sections: (1) the physics section defines exposure circumstances, (2) the clinical/ophthalmologic section includes fundus and scanning laser ophthalmoscope images, and (3) the visual functions section contains specialized visual function exam results. Tools are available for subject-matter experts to estimate parameters like total intraocular energy, ophthalmic lesion grade, and exposure probability. The database is research oriented to provide a means for generating empirical relationships to identify symptoms for definitive diagnosis and treatment of laser induced eye injuries.

Construction and validation of a list of common Middle Eastern surnames for epidemiological research

PubMed Central

Nasseri, Kiumarss

2007-01-01

Purpose Middle Eastern (ME) population is rapidly growing in the US but cannot be easily identified in cancer registry or other databases for epidemiological research. The purpose of this study was to develop a list of common Middle Eastern surnames and validate it by linking with a cancer registry incidence files. Methods Surnames and place of birth in the Middle East were obtained from various sources. After exclusion of the non-specific entries, the final combined list included 49,610 surnames and was matched with the California Cancer Registry incidence file for 1988-2003. Results Overall, 1.4% of all registered cases were positively identified as ME that is similar to the proportion of ME population in California. Two third of the identified cases had known place of birth in the Middle East and of those, 70% were non-Arabs. The sensitivity of the list in detecting ME birth in men and women are 91% and 86%, respectively. The positive predictive values for men and women are 72% and 65%. The specificity and negative predictive values are universally over 99 percent. Conclusion The high accuracy reported for this Middle Eastern surname list (MESL) makes it a valuable tool for epidemiological studies of this ethnic population. PMID:18023539

Complications after carotid endarterectomy are related to surgical errors in less than one-fifth of cases. Swedvasc--The Swedish Vascular Registry and The Quality Committee for Carotid Artery Surgery.

PubMed

Troëng, T; Bergqvist, D; Norrving, B; Ahari, A

1999-07-01

to study possible relations between indications, contraindications and surgical technique and stroke and/or death within 30 days of carotid endarterectomy (CEA). analysis of hospital records for patients identified in a national vascular registry. during 1995-1996, 1518 patients were reported to the Swedish Vascular Registry - Swedvasc. Among these the sixty-five with a stroke and/or death within 30 days were selected for study. Complete surgical records were reviewed by three approved reviewers using predetermined criteria for indications and possible errors. an error of surgical technique or postoperative management was found in eleven patients (17%). In six cases (9%) the indication was inappropriate or there was an obvious contraindication. The indication was questionable in fourteen (21.5%). Half of the patients (52.5%) had surgery for an appropriate indication, and no contraindication or error in surgical technique or management was identified. more than half the complications of CEA represent the "method cost", i.e. the indication, risk and surgical technique were correct. However, the stroke and/or death rate might be reduced if all operations conformed to agreed criteria. Copyright 1999 W.B. Saunders Company Ltd.

Transfusion medicine and solid organ transplant - Update and review of some current issues.

PubMed

Sarkar, R S; Philip, J; Yadav, Pramod

2013-04-01

Transfusion medicine holds a place of prime importance in organ transplant surgeries. There is a huge demand of organs worldwide with long waiting periods before the organ is available for transplant. Currently the dependency on ABO and HLA matching has decreased considerably with the use of modern immunosuppressant drugs and transplant techniques. The greatest advance in clinical implementation of ABO-incompatible transplants came about through desensitization and isoagglutinin elimination techniques with immunoadsorption and anti-CD20 antibodies becoming the norm, and spleenectomy fading out. The implications and practices of transfusion medicine in organ transplant are also undergoing drastic changes. The practice of infusion of one unit of donor's blood preoperatively for immunomodulation is no longer practiced. Use of leuco-reduced products has shown decreasing trends of alloimmunization and graft rejection in cases of multiple surgeries related to organ transplants. Worldwide donor and recipient registry programmes are being setup and existing ones are being upgraded. Such a registry system has been opened in India for kidney transplant cases very recently. Due to such registry programmes the dependency on siblings and directed donations have decreased considerably. This review deals with some of the current issues contributing to the successful outcome of mismatched transplants and the changing concepts of transfusion medicine related to it.

Clinical Trials in Dentistry: A Cross-sectional Analysis of World Health Organization-International Clinical Trial Registry Platform.

PubMed

Sivaramakrishnan, Gowri; Sridharan, Kannan

2016-06-01

Clinical trials are the back bone for evidence-based practice (EBP) and recently EBP has been considered the best source of treatment strategies available. Clinical trial registries serve as databases of clinical trials. As regards to dentistry in specific data on the number of clinical trials and their quality is lacking. Hence, the present study was envisaged. Clinical trials registered in WHO-ICTRP (http://apps.who.int/trialsearch/AdvSearch.aspx) in dental specialties were considered. The details assessed from the collected trials include: Type of sponsors; Health condition; Recruitment status; Study design; randomization, method of randomization and allocation concealment; Single or multi-centric; Retrospective or prospective registration; and Publication status in case of completed studies. A total of 197 trials were identified. Maximum trials were from United States (n = 30) and United Kingdom (n = 38). Seventy six trials were registered in Clinical Trials.gov, 54 from International Standards of Reporting Clinical Trials, 13 each from Australia and New Zealand Trial Register and Iranian Registry of Clinical Trials, 10 from German Clinical Trial Registry, eight each from Brazilian Clinical Trial Registry and Nederland's Trial Register, seven from Japan Clinical Trial Registry, six from Clinical Trial Registry of India and two from Hong Kong Clinical Trial Registry. A total of 78.7% studies were investigator-initiated and 64% were completed while 3% were terminated. Nearly four-fifths of the registered trials (81.7%) were interventional studies of which randomized were the large majority (94.4%) with 63.2% being open label, 20.4% using single blinding technique and 16.4% were doubled blinded. The number, methodology and the characteristics of clinical trials in dentistry have been noted to be poor especially in terms of being conducted multi-centrically, employing blinding and the method for randomization and allocation concealment. More emphasis has to be laid down on the quality of trials being conducted in order to provide justice in the name of EBP. Copyright © 2016 Elsevier Inc. All rights reserved.

Incidence of Appendicitis over Time: A Comparative Analysis of an Administrative Healthcare Database and a Pathology-Proven Appendicitis Registry

PubMed Central

Clement, Fiona; Zimmer, Scott; Dixon, Elijah; Ball, Chad G.; Heitman, Steven J.; Swain, Mark; Ghosh, Subrata

2016-01-01

Importance At the turn of the 21st century, studies evaluating the change in incidence of appendicitis over time have reported inconsistent findings. Objectives We compared the differences in the incidence of appendicitis derived from a pathology registry versus an administrative database in order to validate coding in administrative databases and establish temporal trends in the incidence of appendicitis. Design We conducted a population-based comparative cohort study to identify all individuals with appendicitis from 2000 to2008. Setting & Participants Two population-based data sources were used to identify cases of appendicitis: 1) a pathology registry (n = 8,822); and 2) a hospital discharge abstract database (n = 10,453). Intervention & Main Outcome The administrative database was compared to the pathology registry for the following a priori analyses: 1) to calculate the positive predictive value (PPV) of administrative codes; 2) to compare the annual incidence of appendicitis; and 3) to assess differences in temporal trends. Temporal trends were assessed using a generalized linear model that assumed a Poisson distribution and reported as an annual percent change (APC) with 95% confidence intervals (CI). Analyses were stratified by perforated and non-perforated appendicitis. Results The administrative database (PPV = 83.0%) overestimated the incidence of appendicitis (100.3 per 100,000) when compared to the pathology registry (84.2 per 100,000). Codes for perforated appendicitis were not reliable (PPV = 52.4%) leading to overestimation in the incidence of perforated appendicitis in the administrative database (34.8 per 100,000) as compared to the pathology registry (19.4 per 100,000). The incidence of appendicitis significantly increased over time in both the administrative database (APC = 2.1%; 95% CI: 1.3, 2.8) and pathology registry (APC = 4.1; 95% CI: 3.1, 5.0). Conclusion & Relevance The administrative database overestimated the incidence of appendicitis, particularly among perforated appendicitis. Therefore, studies utilizing administrative data to analyze perforated appendicitis should be interpreted cautiously. PMID:27820826

Transcatheter aortic valve replacement and vascular complications definitions.

PubMed

Van Mieghem, Nicolas M; Généreux, Philippe; van der Boon, Robert M A; Kodali, Susheel; Head, Stuart; Williams, Matthew; Daneault, Benoit; Kappetein, Arie-Pieter; de Jaegere, Peter P; Leon, Martin B; Serruys, Patrick W

2014-03-20

Transcatheter aortic valve replacement (TAVR) requires large calibre catheters and is therefore associated with increased vascular complications. The aim of this study was to illustrate the impact of the different definitions of major vascular complications on their incidence and to underscore the importance of uniform reporting. We pooled dedicated databases of consecutive patients undergoing TAVR from two tertiary care facilities and looked for the incidence of major vascular complications using various previously reported definitions. The level of agreement (Kappa statistic) between the respective definitions and the Valve Academic Research Consortium (VARC) consensus definition of vascular complications was assessed. A total of 345 consecutive patients underwent transfemoral TAVR and were included in this analysis. A completely percutaneous access and closure technique was applied in 96% of cases. Arterial sheath size ranged between 18 and 24 Fr, the majority being 18 Fr (60%). Procedural success was reached in 94.5%. Depending on the definition used, major vascular complications occurred in 5.2-15.9% of patients. According to the VARC definitions, the rate of major and minor vascular complications was 9.0% and 9.6%, respectively. Major vascular complications according to VARC criteria demonstrated at least a substantial level of agreement with the SOURCE registry (k 0.80), the UK registry (k 0.82) the Italian registry (k 0.72) and "FRANCE" registry (k 0.70) definitions, compared to a moderate level of agreement with the definitions used in the German registry ( 0.47) and the 18 Fr Safety and Efficacy study (k 0.42). Minor complications according to VARC demonstrated a moderate agreement only with vascular complications using the German registry definition (k 0.54). Non-uniformity in how vascular complications are defined precludes any reliable comparison between previously reported TAVR registries. The VARC consensus document offers standardised endpoint definitions and should be universally adopted to obtain better insights into global TAVR experience.

Validating the Use of ICD-9 Code Mapping to Generate Injury Severity Scores

PubMed Central

Fleischman, Ross J.; Mann, N. Clay; Dai, Mengtao; Holmes, James F.; Wang, N. Ewen; Haukoos, Jason; Hsia, Renee Y.; Rea, Thomas; Newgard, Craig D.

2017-01-01

The Injury Severity Score (ISS) is a measure of injury severity widely used for research and quality assurance in trauma. Calculation of ISS requires chart abstraction, so it is often unavailable for patients cared for in nontrauma centers. Whether ISS can be accurately calculated from International Classification of Diseases, Ninth Revision (ICD-9) codes remains unclear. Our objective was to compare ISS derived from ICD-9 codes with those coded by trauma registrars. This was a retrospective study of patients entered into 9 U.S. trauma registries from January 2006 through December 2008. Two computer programs, ICDPIC and ICDMAP, were used to derive ISS from the ICD-9 codes in the registries. We compared derived ISS with ISS hand-coded by trained coders. There were 24,804 cases with a mortality rate of 3.9%. The median ISS derived by both ICDPIC (ISS-ICDPIC) and ICDMAP (ISS-ICDMAP) was 8 (interquartile range [IQR] = 4–13). The median ISS in the registry (ISS-registry) was 9 (IQR = 4–14). The median difference between either of the derived scores and ISS-registry was zero. However, the mean ISS derived by ICD-9 code mapping was lower than the hand-coded ISS in the registries (1.7 lower for ICDPIC, 95% CI [1.7, 1.8], Bland–Altman limits of agreement = −10.5 to 13.9; 1.8 lower for ICDMAP, 95% CI [1.7, 1.9], limits of agreement = −9.6 to 13.3). ICD-9-derived ISS slightly underestimated ISS compared with hand-coded scores. The 2 methods showed moderate to substantial agreement. Although hand-coded scores should be used when possible, ICD-9-derived scores may be useful in quality assurance and research when hand-coded scores are unavailable. PMID:28033134

[Characteristics and clinical course of patients with acute heart failure and the therapeutic measures applied in Spanish emergency departments: based on the EAHFE registry (Epidemiology of Acute Heart Failure in Emergency Departments)].

PubMed

Llorens, Pere; Escoda, Rosa; Miró, Òscar; Herrero-Puente, Pablo; Martín-Sánchez, Francisco Javier; Jacob, Javier; Garrido, José Manuel; Pérez-Durá, María José; Gil, Cristina; Fuentes, Marta; Alonso, Héctor; Muller, Christian; Mebazaa, Alexander

2015-02-01

To analyze data recorded in the EAHFE registry (Epidemiology of Acute Heart Failure in Emergency Departments), which collects information on the clinical characteristics and laboratory findings of patients with acute heart failure (AHF) treated in 29 Spanish hospital emergency departments (EDs) as well as therapies used and clinical course. We analyzed changes in management observed over time and compared the results with data recorded in other AHF registries. Prospective multicenter cohort study of consecutive patients treated in 3 different years: 2007, 2009, and 2011. We collected demographic, clinical, and laboratory data; medications taken prior to the emergency and in the ED; and outcome variables (in-hospital and 30-day and 1-year mortality rates, readmissions within 30 days). Changes in therapy and course in the 3 years were analyzed. The literature was reviewed to find other national and international AHF registries. A total of 5845 patients were included (2007, 948; 2009, 1483; 2011, 3414). The mean age was 79 years and 56% were women. The AHF episode registered was the first experienced by 34.6% of the patients. Comorbidity was high: 82% had hypertension, 42.3% had diabetes mellitus, and 47.7% had atrial fibrillation. Severe or total functional dependence was observed in 21.9%, and 57.3% had systolic dysfunction (left ventricular ejection fraction, 38.3%). The main treatments administered consisted in diuretics (96.8%), endovenous nitroglycerine (20.7%), noninvasive ventilation (6.4%), and inotropic agents or vasopressors (3.6%). The glomerular filtration rate was low in 57%. Troponin and natriuretic peptide levels were measured in the EDs in 49.1% and 42.4% of the cases, respectively. Patients presented as normotensive in 66.4% of the cases, hypertensive in 23.5%, and hypotensive in 4.6% (0.7% in shock); 76.1% were admitted (1.9% to the ICU). The median hospital stay was 7 days and 23.9% were discharged from the ED. In-hospital mortality was 7.6%; 30-day mortality was 9.4% and 1-year mortality 29.5%. Orders for troponin and natriuretic peptide determinations increased over the 3 study periods, and the intravenous infusion of diuretics and inotropic agents and vasoconstrictors decreased (P < 0.001, all comparisons). Revisits within 30 days also decreased (P = 0.004). No changes were observed in in-hospital or 30-day mortality rates between 2007 and 2011. We reviewed 14 previously published registry reports (8 compiled prospectively); only 2 of the registries included ED patients. The EAHFE registry describes the characteristics of AHF in a cohort that resembles the universe of our patients with AHF. Significant changes were observed over time in some aspects of AHF management. Revisits decreased, but mortality rates remained unchanged. Only 2 other previously analyzed registries included patients with AHF treated in hospital EDs.

Prevalence of autosomal dominant polycystic kidney disease in the European Union.

PubMed

Willey, Cynthia J; Blais, Jaime D; Hall, Anthony K; Krasa, Holly B; Makin, Andrew J; Czerwiec, Frank S

2017-08-01

Autosomal dominant polycystic kidney disease (ADPKD) is a leading cause of end-stage renal disease, but estimates of its prevalence vary by >10-fold. The objective of this study was to examine the public health impact of ADPKD in the European Union (EU) by estimating minimum prevalence (point prevalence of known cases) and screening prevalence (minimum prevalence plus cases expected after population-based screening). A review of the epidemiology literature from January 1980 to February 2015 identified population-based studies that met criteria for methodological quality. These examined large German and British populations, providing direct estimates of minimum prevalence and screening prevalence. In a second approach, patients from the 2012 European Renal Association‒European Dialysis and Transplant Association (ERA-EDTA) Registry and literature-based inflation factors that adjust for disease severity and screening yield were used to estimate prevalence across 19 EU countries (N = 407 million). Population-based studies yielded minimum prevalences of 2.41 and 3.89/10 000, respectively, and corresponding estimates of screening prevalences of 3.3 and 4.6/10 000. A close correspondence existed between estimates in countries where both direct and registry-derived methods were compared, which supports the validity of the registry-based approach. Using the registry-derived method, the minimum prevalence was 3.29/10 000 (95% confidence interval 3.27-3.30), and if ADPKD screening was implemented in all countries, the expected prevalence was 3.96/10 000 (3.94-3.98). ERA-EDTA-based prevalence estimates and application of a uniform definition of prevalence to population-based studies consistently indicate that the ADPKD point prevalence is <5/10 000, the threshold for rare disease in the EU. © The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA.

Data from a nationwide registry on sports-related sudden cardiac deaths in Germany

PubMed Central

Scharhag, Jürgen; Meyer, Tim

2015-01-01

Background Prospective national registries examining the incidence and aetiology of sports-related sudden cardiac death (SrSCD) not only in competitive athletes but also in recreational sports participants are uncommon. In May 2012, a prospective registry on SrSCD was installed to examine the incidence and particularly the aetiology of such events in the general population in Germany. Methods The registry consists of a web-based platform to record SrSCD cases. Media-monitoring and cooperation with 15 institutes of forensic medicine complemented the search. SrSCD was defined as death occurring during sports activity or up to 1 hour after its cessation, regardless of successful resuscitation. We included subjects at all levels of competition as well as recreational athletes. Results After 30 months of observation, 144 SrSCDs were recorded (mean age 46.8 ± 16.2 years). The overall incidence was 1.2–1.5/million/year, with 97% being male. Most of the cases occurred in the context of non-elite competitive or recreational sports. Football and running were the most common disciplines. In subjects ≤35 years, myocarditis prevailed, whereas in athletes ≥35 years, CAD predominated by far. Few cardiomyopathies were observed. Conclusions In Germany, the largest proportion of SrSCDs occurs in middle-aged men during recreational sports or non-elite competitive sports. The distribution of cardiac diseases responsible for SrSCD seems to vary among European countries. Our findings may indicate the need for a larger focus on myocarditis prevention in the young as well as widening the screening scope to younger athletes below the ‘elite’ level and to senior athletes. PMID:26130495

Data from a nationwide registry on sports-related sudden cardiac deaths in Germany.

PubMed

Bohm, Philipp; Scharhag, Jürgen; Meyer, Tim

2016-04-01

Prospective national registries examining the incidence and aetiology of sports-related sudden cardiac death (SrSCD) not only in competitive athletes but also in recreational sports participants are uncommon. In May 2012, a prospective registry on SrSCD was installed to examine the incidence and particularly the aetiology of such events in the general population in Germany. The registry consists of a web-based platform to record SrSCD cases. Media-monitoring and cooperation with 15 institutes of forensic medicine complemented the search. SrSCD was defined as death occurring during sports activity or up to 1 hour after its cessation, regardless of successful resuscitation. We included subjects at all levels of competition as well as recreational athletes. After 30 months of observation, 144 SrSCDs were recorded (mean age 46.8 ± 16.2 years). The overall incidence was 1.2-1.5/million/year, with 97% being male. Most of the cases occurred in the context of non-elite competitive or recreational sports. Football and running were the most common disciplines. In subjects ≤35 years, myocarditis prevailed, whereas in athletes ≥35 years, CAD predominated by far. Few cardiomyopathies were observed. In Germany, the largest proportion of SrSCDs occurs in middle-aged men during recreational sports or non-elite competitive sports. The distribution of cardiac diseases responsible for SrSCD seems to vary among European countries. Our findings may indicate the need for a larger focus on myocarditis prevention in the young as well as widening the screening scope to younger athletes below the 'elite' level and to senior athletes. © The European Society of Cardiology 2015.

Changing demographics, epidemiology, and survival of incident pulmonary arterial hypertension: results from the pulmonary hypertension registry of the United Kingdom and Ireland.

PubMed

Ling, Yi; Johnson, Martin K; Kiely, David G; Condliffe, Robin; Elliot, Charlie A; Gibbs, J Simon R; Howard, Luke S; Pepke-Zaba, Joanna; Sheares, Karen K K; Corris, Paul A; Fisher, Andrew J; Lordan, James L; Gaine, Sean; Coghlan, J Gerry; Wort, S John; Gatzoulis, Michael A; Peacock, Andrew J

2012-10-15

Incident pulmonary arterial hypertension was underrepresented in most pulmonary hypertension registries and may have a different disease profile to prevalent disease. To determine the characteristics and outcome of a purely incident, treatment-naive cohort of idiopathic, heritable, and anorexigen-associated pulmonary arterial hypertension and to determine the changes in presentations and survival over the past decade in the United Kingdom and Ireland. All consecutive newly diagnosed patients from 2001 to 2009 were identified prospectively. A total of 482 patients (93% idiopathic, 5% heritable, and 2% anorexigen-associated pulmonary arterial hypertension) were diagnosed, giving rise to an estimated incidence of 1.1 cases per million per year and prevalence of 6.6 cases per million in 2009. Younger patients (age ≤ 50 yrs) had shorter duration of symptoms, fewer comorbidities, better functional and exercise capacity, higher percent diffusing capacity of carbon monoxide, more severe hemodynamic impairment, but better survival compared with older patients. In comparison with the earlier cohorts, patients diagnosed in 2007-2009 were older, more obese, had lower percent diffusing capacity of carbon monoxide,(,) and more comorbidities, but better survival. Registry to Evaluate Early and Long-Term Pulmonary Arterial Hypertension Disease Management (REVEAL) equation, REVEAL risk score, and Pulmonary Hypertension Connection Registry survival equation accurately predicted survival of our incident cohort at 1 year. This study highlights the influence of age on phenotypes of incident pulmonary arterial hypertension and has shown the changes in demographics and epidemiology over the past decade in a national setting. The results suggest that there may be two subtypes of patients: the younger subtype with more severe hemodynamic impairment but better survival, compared with the older subtype who has more comorbidities.

Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data

PubMed Central

2016-01-01

Background The National ALS Registry is made up of two components to capture amyotrophic lateral sclerosis (ALS) cases: national administrative databases (Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) and self-identified cases captured by the Registry’s web portal. This study describes self-reported characteristics of U.S. adults with ALS using the data collected by the National ALS Registry web portal risk factor surveys only from October 19, 2010 through December 31, 2013. Objective To describe findings from the National ALS Registry’s web portal risk factor surveys. Measurements The prevalence of select risk factors among adults with ALS was determined by calculating the frequencies of select risk factors—smoking and alcohol (non, current and former) histories, military service and occupational history, and family history of neurodegenerative diseases such as ALS, Alzheimer’s and/or Parkinson’s. Results Nearly half of survey respondents were ever smokers compared with nearly 41% of adults nationally. Most respondents were ever drinkers which is comparable to national estimates. The majority were light drinkers. Nearly one-quarter of survey respondents were veterans compared with roughly 9% of US adults nationally. Most respondents were retired or disabled. The industries in which respondents were employed for the longest time were Professional and Scientific and Technical Services. When family history of neurodegenerative diseases in first degree relatives was evaluated against our comparison group, the rates of ALS were similar, but were higher for Parkinson’s disease, Alzheimer’s disease and any neurodegenerative diseases. Conclusions The National ALS Registry web portal, to our knowledge, is the largest, most geographically diverse collection of risk factor data about adults living with ALS. Various characteristics were consistent with other published studies on ALS risk factors and will allow researchers to generate hypotheses for future research. PMID:27124833

The Central Registry for Child Abuse Cases: Rethinking Basic Assumptions

ERIC Educational Resources Information Center

Whiting, Leila

1977-01-01

Class data pools on abused and neglected children and their families are found desirable for program planning, but identification by name is of questionable value and possibly a dangerous invasion of civil liberties. (MS)

The Effect of Exposure to Ultraviolet Radiation in Infancy on Melanoma Risk.

PubMed

Gefeller, Olaf; Fiessler, Cornelia; Radespiel-Tröger, Martin; Uter, Wolfgang; Pfahlberg, Annette B

2016-01-01

Evidence on the effect of ultraviolet radiation (UVR) exposure in infancy on melanoma risk in later life is scarce. Three recent studies suffering from methodological shortcomings suggested that people born in spring carry a higher melanoma risk. Data from the Bavarian population-based cancer registry on 28374 incident melanoma cases between 2002 and 2012 were analyzed to reexamine this finding. Crude and adjusted analyses - using negative binomial regression models - were performed addressing the relationship. In the crude analysis, the birth months March - May were significantly overrepresented among melanoma cases. However, after additionally adjusting for the birth month distribution of the Bavarian population, the ostensible seasonal effect disappeared. Similar results emerged in all subgroup analyses. Our large registry-based study provides no evidence that people born in spring carry a higher risk for developing melanoma in later life and thus lends no support to the hypothesis of higher UVR-susceptibility during the first months of life.

Central nervous system drug consumption depending on the time between symptom onset and the diagnosis of Alzheimer's disease: an analysis by the Registry of Dementias of Girona.

PubMed

Calvó-Perxas, Laia; López-Pousa, Secundino; Vilalta-Franch, Joan; Turró-Garriga, Oriol; Blankenburg, Michael; Febrer, Laia; Flaqué, Margarida; Vallmajó, Natàlia; Aguirregomozcorta, Maria; Genís, David; Casas, Isabel; Perkal, Héctor; Coromina, Joan; Garre-Olmo, Josep

2012-01-01

To describe central nervous system (CNS) drug consumption patterns depending on the time to diagnosis of Alzheimer's disease (AD), and to check whether the cases diagnosed later are associated with greater severity and consuming more CNS drugs. Cross-sectional study using 952 cases of the Registry of Dementias of Girona. A binary logistic regression was used to detect variables associated with the use of CNS drugs depending on the time to diagnosis. CNS drugs were consumed by 95.8% of the AD patients. Only antipsychotics presented a statistically significant increase in the frequency of prescription to patients with longer time elapsed from symptom onset to AD diagnosis. Longer time elapsed from the onset of symptoms to the diagnosis resulted in increased probability of antipsychotic consumption. Copyright © 2012 S. Karger AG, Basel.

Pseudonyms for cancer registries.

PubMed

Pommerening, K; Miller, M; Schmidtmann, I; Michaelis, J

1996-06-01

In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

The Kola Birth Registry and perinatal mortality in Moncegorsk, Russia.

PubMed

Vaktskjold, Arild; Talykova, Ljudmila; Chashchin, Valerij; Nieboer, Evert; Odland, Jon Øyvind

2004-01-01

A population-based birth registry has been set up for the Arctic town of Moncegorsk in north-western Russia. In this investigation, the quality and the content of the registry are assessed and the perinatal mortality (PM) rates in the period 1973-97 estimated. Enrollment in the Kola Birth Registry (KBR) involved the retrospective inclusion of all births with at least 28 weeks of gestation in Moncegorsk in the period 1973-97. The data in the registry were assessed for data entry errors, completeness of data and population coverage. The annual PM rates were estimated for live- and stillborns with at least 28 weeks of gestation. The KBR contains detailed information about the newborn, delivery, pregnancy and mother for 21 214 births by women from Moncegorsk, covering at least 96% of all the births by the population in the period studied. No records were missing data for gender and birth date of the newborn, and more than 99.9% of the records contained data about gestational age and birthweight. Data concerning the mothers' employment were missing in 0.4% of the records. The annual PM rate fell from more than 20 to less than 10 deaths per 1000 births during this period. The KBR provides an extensive data source useful for case-control and register-based prospective studies, and constitutes the first such compilation in Russia. The homogeneity of the population in Moncegorsk makes it advantageous for epidemiological investigations. The PM rate in Moncegorsk was lower than the overall rate in Russia.

Design and rationale for the Influenza vaccination After Myocardial Infarction (IAMI) trial. A registry-based randomized clinical trial.

PubMed

Fröbert, Ole; Götberg, Matthias; Angerås, Oskar; Jonasson, Lena; Erlinge, David; Engstrøm, Thomas; Persson, Jonas; Jensen, Svend E; Omerovic, Elmir; James, Stefan K; Lagerqvist, Bo; Nilsson, Johan; Kåregren, Amra; Moer, Rasmus; Yang, Cao; Agus, David B; Erglis, Andrejs; Jensen, Lisette O; Jakobsen, Lars; Christiansen, Evald H; Pernow, John

2017-07-01

Registry studies and case-control studies have demonstrated that the risk of acute myocardial infarction (AMI) is increased following influenza infection. Small randomized trials, underpowered for clinical end points, indicate that future cardiovascular events can be reduced following influenza vaccination in patients with established cardiovascular disease. Influenza vaccination is recommended by international guidelines for patients with cardiovascular disease, but uptake is varying and vaccination is rarely prioritized during hospitalization for AMI. The Influenza vaccination After Myocardial Infarction (IAMI) trial is a double-blind, multicenter, prospective, registry-based, randomized, placebo-controlled, clinical trial. A total of 4,400 patients with ST-segment elevation myocardial infarction (STEMI) or non-STEMI undergoing coronary angiography will randomly be assigned either to in-hospital influenza vaccination or to placebo. Baseline information is collected from national heart disease registries, and follow-up will be performed using both registries and a structured telephone interview. The primary end point is a composite of time to all-cause death, a new AMI, or stent thrombosis at 1 year. The IAMI trial is the largest randomized trial to date to evaluate the effect of in-hospital influenza vaccination on death and cardiovascular outcomes in patients with STEMI or non-STEMI. The trial is expected to provide highly relevant clinical data on the efficacy of influenza vaccine as secondary prevention after AMI. Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.

A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.

PubMed

Baili, Paolo; Torresani, Michele; Agresti, Roberto; Rosito, Giuseppe; Daidone, Maria Grazia; Veneroni, Silvia; Cavallo, Ilaria; Funaro, Francesco; Giunco, Marco; Turco, Alberto; Amash, Hade; Scavo, Antonio; Minicozzi, Pamela; Bella, Francesca; Meneghini, Elisabetta; Sant, Milena

2015-01-01

In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.

Regulatory and ethical considerations for linking clinical and administrative databases.

PubMed

Dokholyan, Rachel S; Muhlbaier, Lawrence H; Falletta, John M; Jacobs, Jeffrey P; Shahian, David; Haan, Constance K; Peterson, Eric D

2009-06-01

Clinical data registries are valuable tools that support evidence development, performance assessment, comparative effectiveness studies, and the adoption of new treatments into routine clinical practice. Although these registries do not have important information on long-term therapies or clinical events, administrative claims databases offer a potentially valuable complement. This article focuses on the regulatory and ethical considerations that arise from the use of registry data for research, including linkage of clinical and administrative data sets. (1) Are such activities primarily designed for quality assessment and improvement, research, or both, as this determines the appropriate ethical and regulatory standards? (2) Does the submission of data to a central registry, which may subsequently be linked to other data sources, require review by the institutional review board (IRB) of each participating organization? (3) What levels and mechanisms of IRB oversight are appropriate for the existence of a linked central data repository and the specific studies that may subsequently be developed using it? (4) Under what circumstances are waivers of informed consent and Health Insurance Portability and Accountability Act authorization required? (5) What are the requirements for a limited data set that would qualify a research activity as not involving human subjects and thus not subject to further IRB review? The approaches outlined in this article represent a local interpretation of the regulations in the context of several clinical data registry projects and focuses on a specific case study of the Society of Thoracic Surgeons National Database.

Case-control study of renal cell carcinoma in relation to occupation, smoking, and alcohol consumption

DOE Office of Scientific and Technical Information (OSTI.GOV)

Brownson, R.C.

1988-05-01

A case-control study based on data from a cancer registry was conducted to evaluate the effects of smoking, alcohol use, and occupation on renal cell cancer risk. Information was obtained for 326 male and female cases and 978 age- and sex-matched controls. Elevated risks were identified for cigarette smokers and for men employed as truck drivers. No relationship between alcohol consumption and renal cancer was observed.

Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya.

PubMed

Korir, Anne; Mauti, Nathan; Moats, Pamela; Gurka, Matthew J; Mutuma, Geoffrey; Metheny, Christine; Mwamba, Peter M; Oyiro, Peter O; Fisher, Melanie; Ayers, Leona W; Rochford, Rosemary; Mwanda, Walter O; Remick, Scot C

2014-01-01

Sub-Saharan Africa cancer registries are beset by an increasing cancer burden further exacerbated by the AIDS epidemic where there are limited capabilities for cancer-AIDS match co-registration. We undertook a pilot study based on a "strength-of-evidence" approach using clinical data that is abstracted at the time of cancer registration for purposes of linking cancer diagnosis to AIDS diagnosis. The standard Nairobi Cancer Registry form was modified for registrars to abstract the following clinical data from medical records regarding HIV infection/AIDS in a hierarchal approach at time of cancer registration from highest-to-lowest strength-of-evidence: 1) documentation of positive HIV serology; 2) antiretroviral drug prescription; 3) CD4+ lymphocyte count; and 4) WHO HIV clinical stage or immune suppression syndrome (ISS), which is Kenyan terminology for AIDS. Between August 1 and October 31, 2011 a total of 1,200 cancer cases were registered. Of these, 171 cases (14.3%) met clinical strength-of-evidence criteria for association with HIV infection/AIDS; 69% (118 cases were tumor types with known HIV association - Kaposi's sarcoma, cervical cancer, non-Hodgkin's and Hodgkin's lymphoma, and conjunctiva carcinoma) and 31% (53) were consistent with non-AIDS defining cancers. Verifiable positive HIV serology was identified in 47 (27%) cases for an absolute seroprevalence rate of 4% among the cancer registered cases with an upper boundary of 14% among those meeting at least one of strength-of-evidence criteria. This pilot demonstration of a hierarchal, clinical strength-of-evidence approach for cancer-AIDS registration in Kenya establishes feasibility, is readily adaptable, pragmatic, and does not require additional resources for critically under staffed cancer registries. Cancer is an emerging public health challenge, and African nations need to develop well designed population-based studies in order to better define the impact and spectrum of malignant disease in the backdrop of HIV infection.

Decreased bed rest post-percutaneous coronary intervention with a 7-French arterial sheath and its effects on vascular complications.

PubMed

Wentworth, Laura J; Bechtum, Elizabeth L; Hoffman, Jessica G; Kramer, Robert R; Bartel, David C; Slusser, Joshua P; Tilbury, Ralph Thomas

2018-01-01

To compare the incidence of femoral access puncture site complications in the control group, who underwent 6 hr of bed rest, with patients in the case group, who underwent 4 hr of bed rest. The ideal bed rest length after percutaneous coronary intervention with a 7-French arterial sheath has been investigated by nursing practice. However, in this larger-sheath-size group, best practices have not been determined, and bed rest time continues to vary markedly among institutions. Retrospective study. Data were retrieved from the National Cardiovascular Data Registry and electronic health records in this retrospective study. Sample size was 401 patients: 152 case patients with 4-hr bed rest and 249 controls with 6-hr bed rest. Case group data were obtained from 20 May 2013-31 December 2014; and control group data, 15 June 2011-20 May 2013. National Cardiovascular Data Registry event rates were generally low in both groups: Only three patients in each group had a bleeding event within 72 hr (2% vs. 1%) and no patient and only two controls had arteriovenous fistula (0% vs. 1%). Complications documented in the electronic health records with institutional femoral access puncture site complication definitions identified bleeding at the access site in eight case patients (5%) and nine controls (4%). Haematoma at the access site occurred in 21 case patients (14%) and 25 controls (10%). The practice change of decreasing bed rest from 6-4 hr for patients with 7-French arterial sheaths post-percutaneous coronary intervention was associated with no significant change in femoral access puncture site complications in either National Cardiovascular Data Registry data or institutional electronic health records data. This introduces expanded evidence of safety in decreasing bed rest length in larger (7-French) arterial sheaths post-percutaneous coronary intervention. © 2017 John Wiley & Sons Ltd.

Trends in Prevalence and Characteristics of Post-Neonatal Cerebral Palsy Cases: A European Registry-Based Study

ERIC Educational Resources Information Center

Germany, Laurence; Ehlinger, Virginie; Klapouszczak, Dana; Delobel, Malika; Hollody, Katalin; Sellier, Elodie; De La Cruz, Javier; Alberge, Corine; Genolini, Christophe; Arnaud, Catherine

2013-01-01

The present paper aims to analyze trends over time in prevalence of cerebral palsy of post-neonatal origin, to investigate whether changes are similar according to severity and to describe the disability profile by etiology. Post-neonatal cases, birth years 1976 to 1998, were identified from the Surveillance of Cerebral Palsy in Europe…

Incidence of eye cancer in Taiwan: an 18-year review.

PubMed

Cheng, C-Y; Hsu, W-M

2004-02-01

To describe the incidence and histologic patterns of eye cancers in Chinese in Taiwan. Beginning in 1979, cases of cancer in Taiwan were reported to the Taiwan National Cancer Registry. Information on all Chinese patients diagnosed with eye malignancies under the International Classification of Disease, Ninth Revision, site 190, was retrieved for analysis from the data bank of the Taiwan National Cancer Registry. In all, 733 cases with primary eye cancers were identified from 1979 to 1996, an 18-year period. The average annual age-standardized incidence of eye cancers was 2.46 per million population (2.57 for male and 2.33 for female). For cases less than 15 years of age, the most common eye malignancy was retinoblastoma (86.0%), followed by rhabdomyosarcoma (3.9%) and lymphoma (2.8%). For cases 15 years of age or older, the most common eye malignancy was melanoma (28.6%), followed by squamous cell sarcoma (21.0%) and lymphoma (20.8%). The time trends of the incidence of eye cancers were relatively stable over the 18-year period in Taiwan. Retinobalstoma, melanoma, and lymphoma were the three most common eye cancers in this Chinese population.

Cancer incidence in Spain, 2015.

PubMed

Galceran, J; Ameijide, A; Carulla, M; Mateos, A; Quirós, J R; Rojas, D; Alemán, A; Torrella, A; Chico, M; Vicente, M; Díaz, J M; Larrañaga, N; Marcos-Gragera, R; Sánchez, M J; Perucha, J; Franch, P; Navarro, C; Ardanaz, E; Bigorra, J; Rodrigo, P; Bonet, R Peris

2017-07-01

Periodic cancer incidence estimates of Spain from all existing population-based cancer registries at any given time are required. The objective of this study was to present the current situation of cancer incidence in Spain. The Spanish Network of Cancer Registries (REDECAN) estimated the numbers of new cancer cases occurred in Spain in 2015 by applying the incidence-mortality ratios method. In the calculus, incidence data from population-based cancer registries and mortality data of all Spain were used. In 2015, nearly a quarter of a million new invasive cancer cases were diagnosed in Spain, almost 149,000 in men (60.0%) and 99,000 in women. Globally, the five most common cancers were those of colon-rectum, prostate, lung, breast and urinary bladder. By gender, the four most common cancers in men were those of prostate (22.4%), colon-rectum (16.6%), lung (15.1%) and urinary bladder (11.7%). In women, the most common ones were those of breast (28.0%), colon-rectum (16.9%), corpus uteri (6.2%) and lung (6.0%). In recent years, cancer incidence in men seems to have stabilized due to the fact that the decrease in tobacco-related cancers compensates for the increase in other types of cancer like those of colon and prostate. In women, despite the stabilization of breast cancer incidence, increased incidence is due, above all, to the rise of colorectal and tobacco-related cancers. To reduce these incident cancer cases, improvement of smoking control policies and extension of colorectal cancer screening should be the two priorities in cancer prevention for the next years.

Incidence and survival time trends for Spanish children and adolescents with leukaemia from 1983 to 2007.

PubMed

Marcos-Gragera, R; Galceran, J; Martos, C; de Munain, A L; Vicente-Raneda, M; Navarro, C; Quirós-Garcia, J R; Sánchez, M-J; Ardanaz, E; Ramos, M; Mateos, A; Salmerón, D; Felipe, S; Peris-Bonet, R

2017-03-01

We have analysed incidence and survival trends of children and adolescents with leukaemia registered in Spanish population-based cancer registries during the period 1983-2007. Childhood and adolescent leukaemia cases were drawn from the 11 Spanish population-based cancer registries. For survival, registries with data for the period 1991-2005 and follow-up until 31-12-2010 were included. Overall incidence trends were evaluated using joinpoint analysis. Observed survival rates were estimated using Kaplan-Meier, and trends were tested using the log-rank test. Based on 2606 cases (2274 children and 332 adolescents), the overall age-adjusted incidence rate (ASRw) of leukaemia was 47.9 cases per million child-years in children and 23.8 in adolescents. The ASRw of leukaemia increased with an annual percentage change of 9.6 % (95 % CI: 2.2-17.6) until 1990 followed by a stabilisation of rates. In adolescents, incidence did not increase. Five-year survival increased from 66 % in 1991-1995 to 76 % in 2001-2005. By age, survival was dramatically lower in infants (0) and adolescents (15-19) than in the other age groups and no improvement was observed. In both children and adolescents, differences in 5-year survival rates among major subgroups of leukaemias were significant. The increasing incidence trends observed in childhood leukaemias during the study period were confined to the beginning of the period. Remarkable improvements in survival have been observed in Spanish children with leukaemias. However, this improvement was not observed in infants and adolescents.

The Practice Pattern of Percutaneous Coronary Intervention in Korea: Based on Year 2014 Cohort of Korean Percutaneous Coronary Intervention (K-PCI) Registry.

PubMed

Gwon, Hyeon-Cheol; Jeon, Dong Woon; Kang, Hyun-Jae; Jang, Jae-Sik; Park, Duk-Woo; Shin, Dong-Ho; Moon, Keon-Woong; Kim, Jung-Sun; Kim, Juhan; Bae, Jang-Whan; Hur, Seung-Ho; Kim, Byung Ok; Choi, Donghoon; Han, Kyoo-Rok; Kim, Hyo-Soo

2017-05-01

Appropriate use criteria (AUC) was developed to improve the quality of percutaneous coronary intervention (PCI). However, these criteria should consider the current practice pattern in the country where they are being applied. The algorithm for the Korean PCI practice pattern (KP3) was developed by modifying the United States-derived AUC in expert consensus meetings. KP3 class A was defined as any strategy with evidence from randomized trials that was more conservative for PCI than medical therapy or coronary artery bypass graft (CABG). Class C was defined as any strategy with less evidence from randomized trials and more aggressive for PCI than medical therapy or CABG. Class B was defined as a strategy that was partly class A and partly class C. We applied the KP3 classification system to the Korean PCI registry. The KP3 class A was noted in 67.7% of patients, class B in 28.8%, and class C in 3.5%. The median proportion of class C cases per center was 2.0%. The distribution of KP3 classes varied significantly depending on clinical and angiographic characteristics. The proportion of KP3 class C cases per center was not significantly dependent on PCI volume, but rather on the percentage of ACS cases in each center. We report the current PCI practice pattern by applying the new KP3 classification in a nationwide PCI registry. The results should be interpreted carefully with due regard for the complex relationships between the determining variables and the healthcare system in Korea.

Automated selection of relevant information for notification of incident cancer cases within a multisource cancer registry.

PubMed

Jouhet, V; Defossez, G; Ingrand, P

2013-01-01

The aim of this study was to develop and evaluate a selection algorithm of relevant records for the notification of incident cases of cancer on the basis of the individual data available in a multi-source information system. This work was conducted on data for the year 2008 in the general cancer registry of Poitou-Charentes region (France). The selection algorithm hierarchizes information according to its level of relevance for tumoral topography and tumoral morphology independently. The selected data are combined to form composite records. These records are then grouped in respect with the notification rules of the International Agency for Research on Cancer for multiple primary cancers. The evaluation, based on recall, precision and F-measure confronted cases validated manually by the registry's physicians with tumours notified with and without records selection. The analysis involved 12,346 tumours validated among 11,971 individuals. The data used were hospital discharge data (104,474 records), pathology data (21,851 records), healthcare insurance data (7508 records) and cancer care centre's data (686 records). The selection algorithm permitted performances improvement for notification of tumour topography (F-measure 0.926 with vs. 0.857 without selection) and tumour morphology (F-measure 0.805 with vs. 0.750 without selection). These results show that selection of information according to its origin is efficient in reducing noise generated by imprecise coding. Further research is needed for solving the semantic problems relating to the integration of heterogeneous data and the use of non-structured information.

Primary osseous tumours of the elbow: 60 years of registry experience

PubMed Central

Halai, Mansur; Gupta, Sanjay; Wallace, David; Rymaszewski, Lech; Mahendra, Ashish

2015-01-01

Background We present the largest series of surgically treated primary bone tumours of the elbow in the English literature (75 cases). We sought to identify characteristics specific to these lesions and recommend an investigatory protocol. Methods The national registry and case notes were reviewed between 1954-2014. Tumours were classified according to Enneking's spectrum. Results There were no benign latent cases in this series as these were managed locally. All patients presented with persistent rest pain, with or without swelling. The distal humerus, in contrast to the proximal radius and ulna, was responsible for the majority and the more aggressive cases. Misdiagnosis was evident in 13% of cases; most of which were attributed to simple bone cysts. All patients that were referred required surgical intervention to either establish the diagnosis or for treatment. Benign tumours had a 19% recurrence rate, with giant cell tumour the most aggressive. Malignant tumours carried 39% local recurrence rate and a 5-year mortality of 61%. Conclusions The suspicion of a tumour should be raised in the patient with unremitting, unexplained, non-mechanical bony elbow pain. These echo the NICE recommendations and we recommend prompt specialist referral. With high rates of local recurrence, we recommend close postoperative monitoring. PMID:27582988

Unsolved homicides in Sweden: A population-based study of 264 homicides.

PubMed

Sturup, Joakim; Karlberg, Daniel; Kristiansson, Marianne

2015-12-01

The clearance rates for homicides have decreased internationally. This retrospective population-based study of all Swedish homicide incidents between 2007 and 2009 (n=264) aims to investigate factors associated with solvability in homicides. Victims were identified in an autopsy registry and offenders in a criminal-conviction registry. Autopsy reports, police files, court verdicts and criminal records were systematically collected and linked. The clearance rate was 86.4% (n=228), and almost three quarters of cases (71.9%) were solved within the first week. Nine factors were significantly associated with the case status; however, only four factors remained significant in the multivariate logistic-regression model. Cases were more likely to be solved if there was an eyewitness and if the victim was intoxicated with alcohol. Moreover, cases were less likely to be solved if the victim had a criminal record in the past five years and was killed by a firearm. In the final model, a Cox proportional-hazards model, where time to arrest was taken into account, only alcohol intoxication were positively and firearms negatively significantly associated with clearance status. The study concludes that cases involving these factors should be granted extra, intensive and lasting resources. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Risk of Serious Infection in Juvenile Idiopathic Arthritis Patients Associated With Tumor Necrosis Factor Inhibitors and Disease Activity in the German Biologics in Pediatric Rheumatology Registry.

PubMed

Becker, Ingrid; Horneff, Gerd

2017-04-01

To examine the effects of tumor necrosis factor inhibitors on the risk for serious infections and other influencing factors in a registry. Patients exposed for the first time to etanercept, adalimumab, or methotrexate and serious infections were identified in the German Biologic Registry for Pediatric Rheumatology (BIKER) registry. Serious infection rates per 1,000 observation-years and relative risks were calculated. Cox regression identified risk factors and provided hazard ratios (HRs) for occurrence of infections. A total of 3,350 patients with 5,919 observation-years fulfilled the inclusion criteria for the study. The first biologic agents were etanercept (1,720 cases) and adalimumab (177 cases). A total of 1,453 patients were treated with methotrexate and no biologic agent. In total, 28 serious infections were reported in 26 patients (4.7 per 1,000 patient-years), 5 with methotrexate (1.6 per 1,000 patient-years), 21 with etanercept (8.1 per 1,000 patient-years), and 2 with adalimumab (9.7 per 1,000 patient-years). Significant univariate risk factors for infection were therapy with biologic agents, disease duration before therapy start, corticosteroid medication, nonbiologic premedications, higher clinical Juvenile Arthritis Disease Activity Score including maximal 10 joints (cJADAS10) at therapy start, and higher mean cJADAS10 during therapy. In multivariate Cox regression, only biologic therapy and cJADAS10 at therapy start remained significant. Risk for infection was increased by etanercept (univariate HR 6.0 [95% confidence interval (95% CI) 2.0-17.5]) or adalimumab (HR 7.3 [95% CI 1.3-40.0]) compared to methotrexate as well as by an elevated cJADAS10 at therapy start (HR 1.1 [95% CI 1.0-1.2] per unit increase). The total rate of serious infections reported in the BIKER registry seems low. Treatment with etanercept or adalimumab increases the risk for serious infection slightly, compared to methotrexate. Disease activity expressed by cJADAS10 appears to be an independent risk factor. © 2016, American College of Rheumatology.

Work-related injuries resulting in death in Chile: a cross-sectional study on 2014 and 2015 registries.

PubMed

Bachelet, Vivienne C

2018-06-09

To characterise work-related fatal events that occurred in Chile in 2014 and 2015 in workers covered by the Occupational Accidents and Professional Disease No 16.744 Act. Cross-sectional on registries of the Chilean Worker's Health and Safety National Information System, specifically focusing on the Fatal Work Accidents Registry of the Social Security Superintendence. Secondary data analysis on all 815 cases of occupational injury-related deaths registered in 2014 and 2015 in Chile and that were accredited by the Social Security Superintendence up to March 2016. Variables relating to employer, workers and the events were analysed. The overall mortality rate for all injuries, both at work and during commuting, per 100 000 workers affiliated to the occupational social security system, was 7.2 for 2014 and 7.3 for 2015. For 2014, the highest mortality rates occurred in the transport and communications sectors (20.15) and the mining sector (18.17), while for 2015 the highest rates were found in the fishing industry (11.3) and in mining (12.1). Seventy-two per cent of cases occurred in small and medium-sized enterprises. Half of the companies that had work-related fatal injuries did not have a risk prevention department. Twenty-two per cent (121) of the companies had previous labour law infractions. The four activities most affected by workers' deaths in the two study years were freight land transport, engineering works under construction, minor works under construction and construction of complete buildings or parts of buildings. Half of all fatal injuries occurred in workers who had been employed for less than a year in their company. This descriptive study provides valuable insight into the current national registry on occupational deaths in Chile. While containing valuable information, the registry was not designed for epidemiological surveillance. Further efforts are needed to achieve a proper epidemiological integration of surveillance data. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

The French prospective multisite registry on sudden unexpected infant death (OMIN): rationale and study protocol

PubMed Central

Levieux, Karine; Patural, Hugues; Harrewijn, Inge; Briand Huchet, Elisabeth; de Visme, Sophie; Gallot, Géraldine; Chalumeau, Martin; Gras Le Guen, Christèle; Hanf, Matthieu; Garcia-Meric, Patricia

2018-01-01

Introduction Even after ‘back-to-sleep’ campaigns, sudden unexpected infant death (SUID) continues to be the leading cause of death for infants 1 month to 1 year old in developed countries, with devastating social, psychological and legal implications for families. To sustainably tackle this problem and decrease the number of SUIDs, a French SUID registry was initiated in 2015 to (1) inform prevention with standardised data, (2) understand the mechanisms leading to SUID and the contribution of the already known or newly suggested risk factors and (3) gather a multidisciplinary group of experts to coordinate and develop innovative and urgent research in the SUID area. Methods and analysis This observational multisite prospective observatory includes all cases of sudden unexpected deaths in children younger than 2 years occurring in the French territory covered by the 35 participating French referral centres. From these cases, various data concerning sociodemographic conditions, death scene, personal and family medical history, parental behaviours, sleep environment, clinical examinations, biological and imagery investigations and autopsy are systematically collected. These data will be complemented as of 2018 with a biobank of diverse biological samples (blood, hair, urine, faeces and cerebrospinal fluid), with other administrative health-related data (health claim reimbursements and hospital admissions) and socioenvironmental data. Insights from exploratory descriptive statistics and thematic analysis will be combined for the design of targeted strategies to effectively reduce preventable infant deaths. Ethics and dissemination The French sudden unexpected infant death registry (Observatoire National des Morts Inattendues du Nourrisson registry;OMIN) was approved in 2015 by the French Data Protection Authority in clinical research (Commission Nationale de l’Informatique et des Libertés: number 915273) and by an independent ethics committee (Groupe Nantais d’Ethique dans le Domaine de la Santé: number 2015-01-27). Results will be discussed with associations of families affected by SUID, caregivers, funders of the registry, medical societies and researchers and will be submitted to international peer-reviewed journals and presented at international conferences. PMID:29666137

A Demonstration of Simultaneous Electrochemiluminescence

ERIC Educational Resources Information Center

Ibanez, Jorge G.; Zavala-Araiza, Daniel; Sotomayor-Martinez Barranco, Biaani; Torres-Perez, Jonatan; Camacho-Zuniga, Claudia; Bohrmann-Linde, Claudia; Tausch, Michael W.

2013-01-01

Paired (simultaneous) electrochemical processes can increase energy savings in selected cases by using the reactions at both electrodes of an electrochemical cell to perform a desired process, as is the case in the commercially successful chlor-alkali process. In the demonstration described herein, simultaneous blue electrochemiluminescence (ECL)…

Towards data integration automation for the French rare disease registry.

PubMed

Maaroufi, Meriem; Choquet, Rémy; Landais, Paul; Jaulent, Marie-Christine

2015-01-01

Building a medical registry upon an existing infrastructure and rooted practices is not an easy task. It is the case for the BNDMR project, the French rare disease registry, that aims to collect administrative and medical data of rare disease patients seen in different hospitals. To avoid duplicating data entry for health professionals, the project plans to deploy connectors with the existing systems to automatically retrieve data. Given the data heterogeneity and the large number of source systems, the automation of connectors creation is required. In this context, we propose a methodology that optimizes the use of existing alignment approaches in the data integration processes. The generated mappings are formalized in exploitable mapping expressions. Following this methodology, a process has been experimented on specific data types of a source system: Boolean and predefined lists. As a result, effectiveness of the used alignment approach has been enhanced and more good mappings have been detected. Nonetheless, further improvements could be done to deal with the semantic issue and process other data types.

Towards data integration automation for the French rare disease registry

PubMed Central

Maaroufi, Meriem; Choquet, Rémy; Landais, Paul; Jaulent, Marie-Christine

2015-01-01

Building a medical registry upon an existing infrastructure and rooted practices is not an easy task. It is the case for the BNDMR project, the French rare disease registry, that aims to collect administrative and medical data of rare disease patients seen in different hospitals. To avoid duplicating data entry for health professionals, the project plans to deploy connectors with the existing systems to automatically retrieve data. Given the data heterogeneity and the large number of source systems, the automation of connectors creation is required. In this context, we propose a methodology that optimizes the use of existing alignment approaches in the data integration processes. The generated mappings are formalized in exploitable mapping expressions. Following this methodology, a process has been experimented on specific data types of a source system: Boolean and predefined lists. As a result, effectiveness of the used alignment approach has been enhanced and more good mappings have been detected. Nonetheless, further improvements could be done to deal with the semantic issue and process other data types. PMID:26958224

Connecting the Dots

PubMed Central

Ryerson, A. Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

2015-01-01

Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This Special Article examines CDC’s innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and for the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. PMID:26590648

Occupational risk factors for Wilms' tumor

DOE Office of Scientific and Technical Information (OSTI.GOV)

Bunin, G.; Kramer, S.; Nass, C.

A matched case-control study of Wilms' tumor investigated parental occupational risk factors. Cases diagnosed in 1970-1983 were identified through a population-based tumor registry and hospital registries in the Greater Philadelphia area. Controls were selected by random digit dialing and were matched to cases on race, birth date (+/- 3 years), and the area code and exchange of the case's telephone number at diagnosis. Parents of 100 matched pairs were interviewed by telephone. Parents of patients and controls were generally similar in demographic characteristics, except that mothers differed in religion. Published schemes were used to group jobs into clusters of similarmore » exposures and to determine exposures from industry and job title. Analyses were done for preconception, pregnancy, and postnatal time periods. More case than control fathers had jobs in a cluster that includes machinists and welders (odds ratios (ORs) = 4.0-5.7, p less than or equal to 0.04). Paternal exposures to lead, silver, tin, and iron (some exposures of this cluster) were associated with Wilms' tumor in some analyses, with moderate odds ratios (ORs = 1.5-3.4). In general, the highest odds ratios were found for the preconception period among the genetic (prezygotic) cases. No maternal job clusters or exposures gave significantly elevated odds ratios. These results support a previous finding that lead is a risk factor, but not radiation, hydrocarbon, or boron exposures.« less

EsPRit: ethics committee proposals for Long Term Medical Data Registries in rapidly evolving research fields - a future-proof best practice approach.

PubMed

Oberbichler, S; Hackl, W O; Hörbst, A

2017-10-18

Long-term data collection is a challenging task in the domain of medical research. Many effects in medicine require long periods of time to become traceable e.g. the development of secondary malignancies based on a given radiotherapeutic treatment of the primary disease. Nevertheless, long-term studies often suffer from an initial lack of available information, thus disallowing a standardized approach for their approval by the ethics committee. This is due to several factors, such as the lack of existing case report forms or an explorative research approach in which data elements may change over time. In connection with current medical research and the ongoing digitalization in medicine, Long Term Medical Data Registries (MDR-LT) have become an important means of collecting and analyzing study data. As with any clinical study, ethical aspects must be taken into account when setting up such registries. This work addresses the problem of creating a valid, high-quality ethics committee proposal for medical registries by suggesting groups of tasks (building blocks), information sources and appropriate methods for collecting and analyzing the information, as well as a process model to compile an ethics committee proposal (EsPRit). To derive the building blocks and associated methods software and requirements engineering approaches were utilized. Furthermore, a process-oriented approach was chosen, as information required in the creating process of ethics committee proposals remain unknown in the beginning of planning an MDR-LT. Here, we derived the needed steps from medical product certification. This was done as the medical product certification itself also communicates a process-oriented approach rather than merely focusing on content. A proposal was created for validation and inspection of applicability by using the proposed building blocks. The proposed best practice was tested and refined within SEMPER (Secondary Malignoma - Prospective Evaluation of the Radiotherapeutics dose distribution as the cause for induction) as a case study. The proposed building blocks cover the topics of "Context Analysis", "Requirements Analysis", "Requirements Validation", "Electronic Case Report (eCRF) Design" and "Overall Concept Creation". Additional methods are attached with regards to each topic. The goals of each block can be met by applying those methods. The proposed methods are proven methods as applied in e.g. existing Medical Data Registry projects, as well as in software or requirements engineering. Several building blocks and attached methods could be identified in the creation of a generic ethics committee proposal. Hence, an Ethics Committee can make informed decisions on the suggested study via said blocks, using the suggested methods such as "Defining Clinical Questions" within the Context Analysis. The study creators have to confirm that they adhere to the proposed procedure within the ethic proposal statement. Additional existing Medical Data Registry projects can be compared to EsPRit for conformity to the proposed procedure. This allows for the identification of gaps, which can lead to amendments requested by the ethics committee.

Incidence and mortality of herpes simplex encephalitis in Denmark: A nationwide registry-based cohort study.

PubMed

Jørgensen, Laura Krogh; Dalgaard, Lars Skov; Østergaard, Lars Jørgen; Nørgaard, Mette; Mogensen, Trine Hyrup

2017-01-01

We aimed to investigate the incidence and mortality of herpes simplex encephalitis (HSE) in a nationwide cohort. From the Danish National Patient Registry, we identified all adults hospitalised with a first-time diagnosis of HSE in Denmark during 2004-2014. The HSE diagnoses were verified using medical records and microbiological data. Patients were followed for mortality through the Danish Civil Registry System. We estimated age-standardised incidence rates of HSE and 30-day, 60-day, and 1-year cumulative mortality. Furthermore, we assessed whether calendar year, age, gender, level of comorbidity, virus type, and department type was associated with HSE mortality. We identified a total of 230 cases of HSE. Median age was 60.7 years (interquartile range: 49.3-71.6). The overall incidence rate was 4.64 cases per million population per year (95% confidence interval: 4.06-5.28). The cumulative mortality within 30 days, 60 days, and 1 year of the HSE admission was 8.3%, 11.3%, and 18.6%, respectively. Advanced age and presence of comorbidity were associated with increased 60-day and 1-year mortality. This nationwide study of verified HSE found a higher incidence than reported in previous nationwide studies. Presence of comorbidity was identified as a novel adverse prognostic factor. Mortality rates following HSE remain high. Copyright © 2016 The British Infection Association. Published by Elsevier Ltd. All rights reserved.

Potential coeliac disease markers and autoimmunity in olmesartan induced enteropathy: A population-based study.

PubMed

Esteve, Maria; Temiño, Rocío; Carrasco, Anna; Batista, Lissette; Del Val, Adolfo; Blé, Michel; Santaolaria, Santos; Molina-Infante, Javier; Soriano, Germán; Agudo, Sandra; Zabana, Yamile; Andújar, Xavier; Aceituno, Montserrat; Ribes, Josepa; Madridejos, Rosa; Fernández-Bañares, Fernando

2016-02-01

(1) Assess the population-based incidence of severe olmesartan-associated enteropathy. (2) To describe patients of the Spanish registry. (3) Evaluate markers of potential coeliac disease and associated autoimmunity. Crude incidence rates in the area of Terrassa (Catalonia) were calculated. Clinical characteristics of patients in the Spanish registry were collected. Duodenal lymphocyte subpopulations and anti-TG2 IgA deposits were assessed in a subset of patients. Annual incidence rates (2011-2014) ranged from 0 to 22 cases per 10(4) treated patients. Twenty patients were included in the Spanish registry. Nineteen (95%) exhibited villous atrophy and 16 (80%) had severe enteropathy. Lupus-like disease occurred during olmesartan treatment in 3 patients. HLA-DQ2/DQ8 was positive in 64%. Markers of potential coeliac disease were present in 4 out of 8 patients (positive anti-TG2 deposits and/or increased CD3+gammadelta+ intraepithelial lymphocytes and reduced CD3-). Histopathological changes and clinical manifestations including autoimmune disorders improved after olmesartan discontinuation but not after gluten-free diet, irrespective of the presence or absence of coeliac markers. Incidence of severe olmesartan-associated enteropathy was low. Autoimmune phenomena were present in a subset of cases and reversed after olmesartan removal. A genetic coeliac disease background and the presence of potential coeliac markers might uncover predisposing factors. Copyright © 2015 Editrice Gastroenterologica Italiana S.r.l. Published by Elsevier Ltd. All rights reserved.

National Suicide Registry Malaysia (NSRM).

PubMed

Hayati, A N; Kamarul, A K

2008-09-01

To create a nationwide system to capture data on completed suicide in Malaysia i.e. the morbidity, geographic and temporal trends and the population at high risk of suicide. Data from this registry can later be used to stimulate and facilitate further research on suicide. This paper describes the rationale and processes involved in developing a national suicide registry in 2007. The diagnosis of suicide is based on the ICD-10 codes for fatal intentional self-harm (X60-X84). A case report form with an accompanying instruction manual had been prepared to ensure systematic and uniform data collection. State Forensic Pathologist's offices are responsible for data collection in their respective states, and in turn will submit the data to a central data management unit. Data collection began in July 2007 and currently in data cleaning process. Training for source data producers is ongoing. In 2008, the NSRM plans to involve university hospitals into its network as currently only Ministry of Health hospitals are involved. The NSRM will be launching its online application for case registration this year while an overview of results will be available via its public domain at www.nsrm.gov.my beginning 20 April 2008. To efficiently capture the data on suicide, a concerted effort between various agencies is needed. A lot of conceptual work and data base development remains to be done in order to position preventive efforts on a more solid foundation.

Four years of experience with the Australian kidney paired donation programme.

PubMed

Cantwell, Linda; Woodroffe, Claudia; Holdsworth, Rhonda; Ferrari, Paolo

2015-03-01

New approaches to increase kidney transplantation rates through expansion of live donor kidney transplantation have become necessary due to ongoing shortage of deceased donor organs. These strategies include desensitization in antibody-incompatible transplants to overcome the barrier of blood group incompatibility or human leucocyte antigen antibodies between recipient and donor and kidney paired donation (KPD) programmes. In KPD, a kidney transplant candidate with an incompatible live donor joins a registry of other incompatible pairs in order to find potentially compatible transplant solutions. To match the largest possible number of donor-recipient pairs while minimizing immunologic risk, KPD programmes use sophisticated algorithms to identify suitable matches with simultaneous two-way or more complex multi-way exchanges as well as including non-directed anonymous donors to start a chain of compatible transplantations. Because of the significant immunologic barriers when fewer donor options are available, the optimal solution for difficult-to-match, highly sensitized patients is access to more potential donors using large multi-centre or national KPD registries. This review focuses on the first 4 years of experience with the Australian multi-centre KPD programme that was established in October 2010. © 2014 Asian Pacific Society of Nephrology.

From Nonclinical Research to Clinical Trials and Patient-registries: Challenges and Opportunities in Biomedical Research

PubMed Central

de la Torre Hernández, José M.; Edelman, Elazer R.

2018-01-01

The most important challenge faced by human beings is health. The only way to provide better solutions for health care is innovation, true innovation. The only source of true innovation is research, good research indeed. The pathway from a basic science study to a randomized clinical trial is long and not free of bumps and even landmines. These are all the obstacles and barriers that limit the availability of resources, entangle administrative-regulatory processes, and restrain investigators’ initiatives. There is increasing demand for evidence to guide clinical practice but, paradoxically, biomedical research has become increasingly complex, expensive, and difficult to integrate into clinical care with increased barriers to performing the practical aspects of investigation. We face the challenge of increasing the volume of biomedical research and simultaneously improving the efficiency and output of this research. In this article, we review the main stages and methods of biomedical research, from nonclinical studies with animal and computational models to randomized trials and clinical registries, focusing on their limitations and challenges, but also providing alternative solutions to overcome them. Fortunately, challenges are always opportunities in disguise. PMID:28838647

The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders.

PubMed

Parker, Samantha

2014-09-01

This review aims to provide guidance on emerging concepts and policy related to European reference networks (ERNs) for rare diseases (RDs) and the development and management of RD patient registries. A major problem facing many RDs including rare renal disorders is that patients do not have a specialist centre that they can attend where clinicians, working as a multidisciplinary team, are experts in the particular disease. Furthermore, for most RDs, no single centre, and in many cases no single country, has sufficient numbers of patients and resources to fully understand the natural history or to conduct clinical and translational research. Therefore, the pooling of manpower and resources through the establishment of ERN and RD patient registries is a common and necessary area of collaboration. The concept of European networks for RDs dates back to the early 2000s and the Commission launch of a call for European pilot reference networks for RDs. These networks of expert centres have been brought together through the desire for further knowledge and innovation in RD areas. Networks demand a holistic approach and long-term vision with close collaboration between clinicians, diagnostic laboratories, scientists, patients and their families. The development of legal measures for ERNs is in progress at the Commission and these networks will be a shared responsibility of the Commission and member states. In the context of ERNs, an essential activity is the patient registries. Patient registries are organized databases where patient information, including demographic, medical and family history, are collected, stored and available for retrieval via standardized and secure methods. Patient registries are increasingly recognized as crucial tools for RD research for which international collaboration is absolutely essential to understand the pathogenesis of rare genotypes, achieve a unified collection of phenotypic data, foster natural history studies providing the foundation for successful orphan drug development, facilitate studies to identify appropriate clinical endpoints or biomarkers, identify participants for research and clinical trials and support discussions with regulators including the safety and efficacy evaluation of potential therapies. Furthermore, patient registries are often used as part of regulatory decisions and post-marketing surveillance requirements. Data can be entered into a registry by patients, clinicians, researchers or directly imported from patient's health records. The major concern in maintaining the dynamic of these networks and registries is sustainability, as the infrastructures and coordination have a cost. © The Author 2014. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

The EuroMyositis registry: an international collaborative tool to facilitate myositis research

PubMed Central

Wang, Guochun; Wedderburn, Lucy R; Schmidt, Jens; Oakley, Paula; Benveniste, Olivier; Danko, Katalin; Thuy, Nguyen Thi Phuong; Vazquez-Del Mercado, Monica; Andersson, Helena; De Paepe, Boel; deBleecker, Jan L; Maurer, Britta; McCann, Liza J; Pipitone, Nicolo; McHugh, Neil; Betteridge, Zoe E; New, Paul; Cooper, Robert G; Ollier, William E; Lamb, Janine A; Krogh, Niels Steen; Lundberg, Ingrid E; Chinoy, Hector

2018-01-01

Aims The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. Methods Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtypes, extramuscular involvement, environmental exposures and medications were investigated. Results Of 3067 IIM cases, 69% were female. The most common IIM subtype was dermatomyositis (DM) (31%). Smoking was more frequent in connective tissue disease overlap cases (45%, OR 1.44, 95% CI 1.09 to 1.90, p=0.012). Smoking was associated with interstitial lung disease (ILD) (OR 1.32, 95% CI 1.06 to 1.65, p=0.013), dysphagia (OR 1.43, 95% CI 1.16 to 1.77, p=0.001), malignancy ever (OR 1.78, 95% CI 1.36 to 2.33, p<0.001) and cardiac involvement (OR 2.40, 95% CI 1.60 to 3.60, p<0.001). Dysphagia occurred in 39% and cardiac involvement in 9%; either occurrence was associated with higher Health Assessment Questionnaire (HAQ) scores (adjusted OR 1.79, 95% CI 1.43 to 2.23, p<0.001). HAQ scores were also higher in inclusion body myositis cases (adjusted OR 3.85, 95% CI 2.52 to 5.90, p<0.001). Malignancy (ever) occurred in 13%, most commonly in DM (20%, OR 2.06, 95% CI 1.65 to 2.57, p<0.001). ILD occurred in 30%, most frequently in antisynthetase syndrome (71%, OR 10.7, 95% CI 8.6 to 13.4, p<0.001). Rash characteristics differed between adult-onset and juvenile-onset DM cases (‘V’ sign: 56% DM vs 16% juvenile-DM, OR 0.16, 95% CI 0.07 to 0.36, p<0.001). Glucocorticoids were used in 98% of cases, methotrexate in 71% and azathioprine in 51%. Conclusion This large multicentre cohort demonstrates the importance of extramuscular involvement in patients with IIM, its association with smoking and its influence on disease severity. Our findings emphasise that IIM is a multisystem inflammatory disease and will help inform prognosis and clinical management of patients. PMID:28855174

Disease registries on the nationwide health information network.

PubMed

Russler, Daniel

2011-05-01

Donation by individuals of their protected health information (PHI) for evidence-based research potentially benefits all individuals with disease through improved understandings of disease patterns. In the future, a better understanding of how disease features combine into unique patterns of disease will generate new disease classifications, supporting greater specificity in health management techniques. However, without large numbers of people who donate their PHI to disease registries designed for research, it is difficult for researchers to discover the existence of complex patterns or to create more specific evidence-based management techniques. In order to identify new opportunities in disease registry design, an analysis of the current stage of maturity of the newly created U.S. Nationwide Health Information Network (NwHIN) related to large-scale consumer donation of PHI is presented. Utilizing a use-case analysis methodology, the consumer-centric designs of the policies and technologies created for the NwHIN were examined for the potential to support consumer donations of PHI to research. The NwHIN design has placed the enforcement point for the policy-based release of PHI over the Internet into a specialized gateway accessible to consumer authorization. However, current NwHIN policies leave the final decision regarding release of PHI for research to the health care providers rather than to the consumers themselves. Should disease registries designed for research be established on the NwHIN, consumers might then directly authorize the donation of their PHI to these disease registries. However, under current NwHIN policies, consumer authorization does not guarantee release of PHI by health providers. © 2011 Diabetes Technology Society.

Defining incidental perineural invasion: the need for a national registry.

PubMed

Buchanan, Lauren; De'Ambrosis, Brian; DeAmbrosis, Kathryn; Warren, Timothy; Huilgol, Shyamala; Soyer, H Peter; Panizza, Benedict

2014-05-01

This article by the Perineural Invasion (PNI) Registry Group aims to clarify clinical and histopathological ambiguities surrounding PNI in non-melanoma skin cancer (NMSC). PNI is reportedly present in approximately 2-6% of cases of NMSC and is associated with greater rates of morbidity and mortality. The distinction between clinical PNI and incidental PNI is somewhat unclear, especially in regard to management and prognosis. One important objective of the PNI Registry is to develop a standardised method of classifying perineural invasion. Hence, in this article we propose a definition for PNI and for its sub-classification. This article also provides a critical analysis of the current literature on the treatment of incidental PNI by evaluating the key cohort studies that have investigated the use of surgery or radiotherapy in the management of incidental PNI. At present, there are no universal clinical guidelines that specify the acceptable treatment of NMSC exhibiting incidental PNI. Consequently, patients often receive surgery with varying wider margins, or radiotherapy despite the limited evidence substantiating such management options. It is evident from the existing literature that current opinion is divided over the benefit of adjuvant radiotherapy. Certain prognostic factors have been proposed, such as the size and depth of tumour invasion, nerve diameter, the presence of multifocal PNI and the type of tumour. The PNI Registry is a web-based registry that has been developed to assist in attaining further data pertaining to incidental PNI in NMSC. It is envisaged that this information will provide the foundation for identifying and defining best practice in managing incidental PNI. © 2013 The Australasian College of Dermatologists.

Development of an mHealth trauma registry in the Middle East using an implementation science framework

PubMed Central

Mehmood, Amber; Chan, Edward; Allen, Katharine; Al-Kashmiri, Ammar; Al-Busaidi, Ali; Al-Abri, Jehan; Al-Yazidi, Mohamed; Al-Maniri, Abdullah; Hyder, Adnan A.

2017-01-01

ABSTRACT Background: Trauma registries (TRs) play a vital role in the assessment of trauma care, but are often underutilized in countries with a high burden of injuries. Objectives: We investigated whether information and communications technology (ICT) such as mobile health (mHealth) could enable the design of a tablet-based application for healthcare professionals. This would be used to inform trauma care and acquire surveillance data for injury control and prevention in Oman. This paper focuses on documenting the implementation process in a healthcare setting. Methods: The study was conducted using an ICT implementation framework consisting of multistep assessment, development and pilot testing of an electronic tablet-based TR. The pilot study was conducted at two large hospitals in Oman, followed by detailed evaluation of the process, system and impact of implementation. Results: The registry was designed to provide comprehensive information on each trauma case from the location of injury until hospital discharge, with variables organized to cover 11 domains of demographic and clinical information. The pilot study demonstrated that the registry was user friendly and reliable, and the implementation framework was useful in planning for the Omani hospital setting. Data collection by trained and dedicated nurses proved to be more feasible, efficient and reliable than real-time data entry by care providers. Conclusions: The initial results show the promising potential of a user-friendly, comprehensive electronic TR through the use of mHealth tools. The pilot test in two hospitals indicates that the registry can be used to create a multicenter trauma database. PMID:29027507

Drugs with potential chemopreventive properties in relation to epithelial ovarian cancer--a nationwide case-control study.

PubMed

Baandrup, Louise

2015-07-01

Ovarian cancer has a poor prognosis because the disease in the majority of patients is diagnosed at an advanced stage as a result of nonspecific symptoms and lack of efficient screening methods. Because of the poor prognosis of ovarian cancer and the challenge of early detection of the disease, identification of protective factors is important. It has been suggested that some commonly used drugs may have a protective effect against cancer, including ovarian cancer; however, the literature on chemopreventive measures for ovarian cancer is sparse and the results are inconclusive. Most previous studies have substantial methodological constraints, including limited study size and self-reporting of drug use, which introduces potential recall bias and misclassification. This PhD thesis includes a nationwide case-control study to evaluate associations between use of drugs with potential chemopreventive properties and risk of epithelial ovarian cancer. The study is nested in the entire Danish female population using data from the following nationwide registries: the Danish Cancer Registry, the Danish Civil Registration System, the Danish Prescription Registry, the Danish National Patient Register, and registries in Statistics Denmark on fertility, education, and income. Information from the included registries is linked by use of the unique personal identification number assigned to all Danish citizens. The cases were all women in Denmark with epithelial ovarian cancer diagnosed during 2000-2009 (Paper 1) and 2000-2011 (Papers 2 and 3), identified in the Cancer Registry. Age-matched female population controls were randomly selected from the Civil Registration System by risk-set sampling. We required that cases and controls have no history of cancer (except non-melanoma skin cancer) and that controls not previously have undergone bilateral oophorectomy or salpingo-oophorectomy. The total study population comprised 3741 epithelial ovarian cancer cases and 50,576 controls in Paper 1, and 4103 epithelial ovarian cancer cases and 58,706 controls in Papers 2 and 3. We used the Danish Prescription Registry to assess use (≥2 prescriptions on separate dates) of paracetamol, non-aspirin non-steroidal anti-inflammatory drugs (NSAIDs), low-dose aspirin, and statins. Conditional logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for epithelial ovarian cancer associated with use of the study drugs, with adjustment for potential confounding factors selected a priori. We performed detailed analyses according to duration, intensity, and continuity of study drug use, and the analyses were stratified according to specific histologic types of epithelial ovarian cancer. In all studies, non-use (< 2 prescriptions) of the individual study drugs was defined as the reference group. A striking result of the PhD thesis was a strong inverse association between prescription use of paracetamol and risk of epithelial ovarian cancer. The risk estimates decreased with increasing duration and intensity of paracetamol use, reaching a more than 50% reduction for the longest duration (>10 years) and the highest doses (OR: 0.45; 95% CI: 0.24-0.86). In contrast, we did not observe an inverse association between use of non-aspirin NSAIDs and risk of epithelial ovarian cancer. Moreover, this thesis provides further evidence that use of low-dose aspirin is associated with a reduced risk of epithelial ovarian cancer. In particular, long-term (≥5 years) continuous use of low-dose aspirin, defined as overlapping prescription coverage periods, was associated with a large reduction in risk (OR: 0.56; 95% CI: 0.32-0.97). Finally, we found no apparent association between statin use and epithelial ovarian cancer risk, although the analysis by histologic type suggested an inverse association with the risk of mucinous tumors. The results of this PhD thesis add important knowledge to the area of chemoprevention in relation to epithelial ovarian cancer. As for any observational study, we cannot exclude potential con-founding and exposure misclassification; however, methodological limitations appear unlikely to fully explain the observed reductions in epithelial ovarian cancer risk associated with paracetamol and low-dose aspirin use. Additional research, ideally from clinical trials, is needed before our observations may lead to recommendations for chemopreventive measures against ovarian cancer. In case consensus points to a true protective effect of paracetamol or low-dose aspirin, comprehensive risk-benefit evaluations will also have to be performed. We hope that our results will encourage researchers to look more deeply into the potential chemo-preventive effects of the study drugs against epithelial ovarian cancer risk.

Evaluating Early Case Capture of Pediatric Cancers in Seven Central Cancer Registries in the United States, 2013

PubMed Central

Neri, Antonio; Rohan, Elizabeth; Clerkin, Castine; Underwood, J. Michael; Ryerson, A. Blythe; Stewart, Sherri L.

2016-01-01

Objective Cancer is the second-leading cause of death in children, but incidence data are not available until two years after diagnosis, thereby delaying data dissemination and research. An early case capture (ECC) surveillance program was piloted in seven state cancer registries to register pediatric cancer cases within 30 days of diagnosis. We sought to determine the quality of ECC data and understand pilot implementation. Methods We used quantitative and qualitative methods to evaluate ECC. We assessed data quality by comparing demographic and clinical characteristics from the initial ECC submission to a resubmission of ECC pilot data and to the most recent year of routinely collected cancer data for each state individually and in aggregate. We conducted telephone focus groups with registry staff to determine ECC practices and difficulties in August and September 2013. Interviews were recorded, transcribed, and coded to identify themes. Results Comparing ECC initial submissions with submissions for all states, ECC data were nationally representative for age (9.7 vs. 9.9 years) and sex (673 of 1,324 [50.9%] vs. 42,609 of 80,547 [52.9%] male cases), but not for primary site (472 of 1,324 [35.7%] vs. 27,547 of 80,547 [34.2%] leukemia/lymphoma cases), behavior (1,219 of 1,324 [92.1%] vs. 71,525 of 80,547 [88.8%] malignant cases), race/ethnicity (781 of 1,324 [59.0%] vs. 64,518 of 80,547 [80.1%] white cases), or diagnostic confirmation (1,233 of 1,324 [93.2%] vs. 73,217 of 80,547 [90.9%] microscopically confirmed cases). When comparing initial ECC data with resubmission data, differences were seen in race/ethnicity (808 of 1,324 [61.1%] vs. 1,425 of 1,921 [74.2%] white cases), primary site (475 of 1,324 [35.9%] vs. 670 of 1,921 [34.9%] leukemia/lymphoma cases), and behavior (1,215 of 1,324 [91.8%] vs. 1,717 of 1,921 [89.4%] malignant cases). Common themes from focus group analysis included implementation challenges and facilitators, benefits of ECC, and utility of ECC data. Conclusions ECC provided data rapidly and reflected national data overall with differences in several data elements. ECC also expanded cancer reporting infrastructure and increased data completeness and timeliness. Although challenges related to timeliness and increased work burden remain, indications suggest that researchers may reliably use these data for pediatric cancer studies. PMID:26843678

Evaluating Early Case Capture of Pediatric Cancers in Seven Central Cancer Registries in the United States, 2013.

PubMed

Puckett, Mary; Neri, Antonio; Rohan, Elizabeth; Clerkin, Castine; Underwood, J Michael; Ryerson, A Blythe; Stewart, Sherri L

2016-01-01

Cancer is the second-leading cause of death in children, but incidence data are not available until two years after diagnosis, thereby delaying data dissemination and research. An early case capture (ECC) surveillance program was piloted in seven state cancer registries to register pediatric cancer cases within 30 days of diagnosis. We sought to determine the quality of ECC data and understand pilot implementation. We used quantitative and qualitative methods to evaluate ECC. We assessed data quality by comparing demographic and clinical characteristics from the initial ECC submission to a resubmission of ECC pilot data and to the most recent year of routinely collected cancer data for each state individually and in aggregate. We conducted telephone focus groups with registry staff to determine ECC practices and difficulties in August and September 2013. Interviews were recorded, transcribed, and coded to identify themes. Comparing ECC initial submissions with submissions for all states, ECC data were nationally representative for age (9.7 vs. 9.9 years) and sex (673 of 1,324 [50.9%] vs. 42,609 of 80,547 [52.9%] male cases), but not for primary site (472 of 1,324 [35.7%] vs. 27,547 of 80,547 [34.2%] leukemia/lymphoma cases), behavior (1,219 of 1,324 [92.1%] vs. 71,525 of 80,547 [88.8%] malignant cases), race/ethnicity (781 of 1,324 [59.0%] vs. 64,518 of 80,547 [80.1%] white cases), or diagnostic confirmation (1,233 of 1,324 [93.2%] vs. 73,217 of 80,547 [90.9%] microscopically confirmed cases). When comparing initial ECC data with resubmission data, differences were seen in race/ethnicity (808 of 1,324 [61.1%] vs. 1,425 of 1,921 [74.2%] white cases), primary site (475 of 1,324 [35.9%] vs. 670 of 1,921 [34.9%] leukemia/lymphoma cases), and behavior (1,215 of 1,324 [91.8%] vs. 1,717 of 1,921 [89.4%] malignant cases). Common themes from focus group analysis included implementation challenges and facilitators, benefits of ECC, and utility of ECC data. ECC provided data rapidly and reflected national data overall with differences in several data elements. ECC also expanded cancer reporting infrastructure and increased data completeness and timeliness. Although challenges related to timeliness and increased work burden remain, indications suggest that researchers may reliably use these data for pediatric cancer studies.

Human Papillomavirus Genotype Prevalence in Invasive Penile Cancers from a Registry-Based United States Population

PubMed Central

Hernandez, Brenda Y.; Goodman, Marc T.; Unger, Elizabeth R.; Steinau, Martin; Powers, Amy; Lynch, Charles F.; Cozen, Wendy; Saber, Maria Sibug; Peters, Edward S.; Wilkinson, Edward J.; Copeland, Glenn; Hopenhayn, Claudia; Huang, Youjie; Watson, Meg; Altekruse, Sean F.; Lyu, Christopher; Saraiya, Mona

2013-01-01

Background: Human papillomavirus (HPV) is estimated to play an etiologic role in 40–50% of penile cancers worldwide. Estimates of HPV prevalence in U.S. penile cancer cases are limited. Methods: HPV DNA was evaluated in tumor tissue from 79 invasive penile cancer patients diagnosed in 1998–2005 within the catchment areas of seven U.S. cancer registries. HPV was genotyped using PCR-based Linear Array and INNO-LiPA assays and compared by demographic, clinical, and pathologic characteristics and survival. Histological classification was also obtained by independent pathology review. Results: HPV DNA was present in 50 of 79 (63%) of invasive penile cancer cases. Sixteen viral genotypes were detected. HPV 16, found in 46% (36/79) of all cases (72% of HPV-positive cases) was the most prevalent genotype followed equally by HPV 18, 33, and 45, each of which comprised 5% of all cases. Multiple genotypes were detected in 18% of viral positive cases. HPV prevalence did not significantly vary by age, race/ethnicity, population size of geographic region, cancer stage, histology, grade, penile subsite, or prior cancer history. Penile cases diagnosed in more recent years were more likely to be HPV-positive. Overall survival did not significantly vary by HPV status. Conclusion: The relatively high prevalence of HPV in our study population provides limited evidence of a more prominent and, possibly, increasing role of infection in penile carcinogenesis in the U.S. compared to other parts of the world. PMID:24551592

Creation and Validation of an Automated Algorithm to Determine Postoperative Ventilator Requirements After Cardiac Surgery.

PubMed

Gabel, Eilon; Hofer, Ira S; Satou, Nancy; Grogan, Tristan; Shemin, Richard; Mahajan, Aman; Cannesson, Maxime

2017-05-01

In medical practice today, clinical data registries have become a powerful tool for measuring and driving quality improvement, especially among multicenter projects. Registries face the known problem of trying to create dependable and clear metrics from electronic medical records data, which are typically scattered and often based on unreliable data sources. The Society for Thoracic Surgery (STS) is one such example, and it supports manually collected data by trained clinical staff in an effort to obtain the highest-fidelity data possible. As a possible alternative, our team designed an algorithm to test the feasibility of producing computer-derived data for the case of postoperative mechanical ventilation hours. In this article, we study and compare the accuracy of algorithm-derived mechanical ventilation data with manual data extraction. We created a novel algorithm that is able to calculate mechanical ventilation duration for any postoperative patient using raw data from our EPIC electronic medical record. Utilizing nursing documentation of airway devices, documentation of lines, drains, and airways, and respiratory therapist ventilator settings, the algorithm produced results that were then validated against the STS registry. This enabled us to compare our algorithm results with data collected by human chart review. Any discrepancies were then resolved with manual calculation by a research team member. The STS registry contained a total of 439 University of California Los Angeles cardiac cases from April 1, 2013, to March 31, 2014. After excluding 201 patients for not remaining intubated, tracheostomy use, or for having 2 surgeries on the same day, 238 cases met inclusion criteria. Comparing the postoperative ventilation durations between the 2 data sources resulted in 158 (66%) ventilation durations agreeing within 1 hour, indicating a probable correct value for both sources. Among the discrepant cases, the algorithm yielded results that were exclusively correct in 75 (93.8%) cases, whereas the STS results were exclusively correct once (1.3%). The remaining 4 cases had inconclusive results after manual review because of a prolonged documentation gap between mechanical and spontaneous ventilation. In these cases, STS and algorithm results were different from one another but were both within the transition timespan. This yields an overall accuracy of 99.6% (95% confidence interval, 98.7%-100%) for the algorithm when compared with 68.5% (95% confidence interval, 62.6%-74.4%) for the STS data (P < .001). There is a significant appeal to having a computer algorithm capable of calculating metrics such as total ventilator times, especially because it is labor intensive and prone to human error. By incorporating 3 different sources into our algorithm and by using preprogrammed clinical judgment to overcome common errors with data entry, our results proved to be more comprehensive and more accurate, and they required a fraction of the computation time compared with manual review.

Cancer Stage at Diagnosis in HIV-infected People and Transplant Recipients

PubMed Central

Shiels, Meredith S.; Copeland, Glenn; Goodman, Marc T.; Harrell, Janna; Lynch, Charles F.; Pawlish, Karen; Pfeiffer, Ruth M.; Engels, Eric A.

2015-01-01

Background It is unknown whether immunosuppression results in more aggressive, advanced stage cancers. As cancer stage is influenced both by tumor biology and medical surveillance, we assessed cancer stage in HIV-infected individuals and solid organ transplant recipients, two immunosuppressed groups with differences in healthcare utilization. Methods We used data on all cases of 15 cancer types, diagnosed during 1996–2010 in two studies that linked U.S. cancer registries to HIV and transplant registries. Odds ratios (ORs) for advanced (vs. local) disease were estimated comparing HIV and transplant populations to immunocompetent people in polytomous logistic regression models, adjusted for age, sex, race, registry and year. Results A total of 8,411 of 4.5 million cancer cases occurred in HIV-infected people, and 7,322 of 6.4 million cancer cases occurred in transplant recipients. Compared to immunocompetent people with cancer, HIV-infected people were more likely to be diagnosed with distant stage lung (OR=1.13), female breast (OR=1.99), and prostate cancers (OR=1.57), while transplant recipients had fewer distant stage lung (OR=0.54), female breast (OR=0.75) and prostate cancers (OR=0.72). Both immunosuppressed populations had a shift toward advanced stage melanoma (ORs: HIV=1.97; transplant=1.82) and bladder cancer (ORs: HIV=1.42; transplant=1.54). Conclusions Bladder cancer and melanoma were more likely to be diagnosed at non-local stage in both HIV-infected people and transplant recipients, suggesting a role of immunosuppression in their progression. Additionally, we observed a shift for some common cancers toward later stages in HIV-infected individuals and toward earlier stages in transplant recipients, consistent with differential access to medical care or surveillance. PMID:25739496

Use of state cancer surveillance data to estimate the cancer burden in disaster-affected areas--Hurricane Katrina, 2005.

PubMed

Joseph, Djenaba A; Wingo, Phyllis A; King, Jessica B; Pollack, Lori A; Richardson, Lisa C; Wu, Xiaocheng; Chen, Vivien; Austin, Harland D; Rogers, Deirdre; Cook, Janice

2007-01-01

The objective of this study was to estimate the burden of cancer in counties affected by Hurricane Katrina using population-based cancer registry data, and to discuss issues related to cancer patients who have been displaced by disasters. The cancer burden was assessed in 75 counties in Louisiana, Alabama, and Mississippi that were designated by the Federal Emergency Management Agency as eligible for individual and public assistance. Data from the National Program of Cancer Registries were used to determine three-year average annual age-adjusted incidence rates and case counts during the diagnosis years 2000-2002 for Louisiana and Alabama. Expected rates and counts for the most-affected counties in Mississippi were estimated by direct, age-specific calculation using the 2000-2002 county level populations and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana. An estimated 23,549 persons with a new diagnosis of cancer in the past year resided in the disaster-affected counties. Fifty-eight percent of the cases were cancers of the lung/bronchus, colon/rectum, female breast, and prostate. Eleven of the top 15 cancer sites by sex and black/white race in disaster counties had >50% of cases diagnosed at the regional or distant stage. Sizable populations of persons with a recent cancer diagnosis were potentially displaced by Hurricane Katrina. Cancer patients required special attention to access records in order to confirm diagnosis and staging, minimize disruption in treatment, and ensure coverage of care. Cancer registry data can be used to provide disaster planners and clinicians with estimates of the number of cancer patients, many of whom may be undergoing active treatment.

The Current Status of Percutaneous Coronary Intervention in Korea: Based on Year 2014 Cohort of Korean Percutaneous Coronary Intervention (K-PCI) Registry

PubMed Central

Jang, Jae-Sik; Han, Kyoo-Rok; Moon, Keon-Woong; Jeon, Dong Woon; Shin, Dong-Ho; Kim, Jung-Sun; Park, Duk-Woo; Kang, Hyun-Jae; Kim, Juhan; Bae, Jang-Whan; Hur, Seung-Ho; Kim, Byung Ok; Choi, Donghoon; Gwon, Hyeon-Cheol

2017-01-01

Background and Objectives Although several multicenter registries have evaluated percutaneous coronary intervention (PCI) procedures in Korea, those databases have been limited by non-standardized data collection and lack of uniform reporting methods. We aimed to collect and report data from a standardized database to analyze PCI procedures throughout the country. Materials and Methods Both clinical and procedural data, as well as clinical outcomes data during hospital stay, were collected based on case report forms that used a standard set of 54 data elements. This report is based on 2014 Korean PCI registry cohort data. Results A total of 92 hospitals offered data on 44967 PCI procedures. The median age was 66.0 interquartile range 57.0-74.0 years, and 70.3% were men. Thirty-eight percent of patients presented with acute myocardial infarction and one-third of all PCI procedures were performed in an urgent or emergency setting. Non-invasive stress tests were performed in 13.9% of cases, while coronary computed tomography angiography was used in 13.7% of cases prior to PCI. Radial artery access was used in 56.1% of all PCI procedures. Devices that used PCI included drug-eluting stent, plain old balloon angioplasty, drug-eluting balloon, and bare-metal stent (around 91%, 19%, 6%, and 1% of all procedures, respectively). The incidences of in-hospital death, non-fatal myocardial infarction, and stroke were 2.3%, 1.6%, and 0.2%, respectively. Conclusion These data may provide an overview of the current PCI practices and in-hospital outcomes in Korea and could be used as a foundation for developing treatment guidelines and nationwide clinical research. PMID:28567083

The Current Status of Percutaneous Coronary Intervention in Korea: Based on Year 2014 Cohort of Korean Percutaneous Coronary Intervention (K-PCI) Registry.

PubMed

Jang, Jae-Sik; Han, Kyoo-Rok; Moon, Keon-Woong; Jeon, Dong Woon; Shin, Dong-Ho; Kim, Jung-Sun; Park, Duk-Woo; Kang, Hyun-Jae; Kim, Juhan; Bae, Jang-Whan; Hur, Seung-Ho; Kim, Byung Ok; Choi, Donghoon; Gwon, Hyeon-Cheol; Kim, Hyo-Soo

2017-05-01

Although several multicenter registries have evaluated percutaneous coronary intervention (PCI) procedures in Korea, those databases have been limited by non-standardized data collection and lack of uniform reporting methods. We aimed to collect and report data from a standardized database to analyze PCI procedures throughout the country. Both clinical and procedural data, as well as clinical outcomes data during hospital stay, were collected based on case report forms that used a standard set of 54 data elements. This report is based on 2014 Korean PCI registry cohort data. A total of 92 hospitals offered data on 44967 PCI procedures. The median age was 66.0 interquartile range 57.0-74.0 years, and 70.3% were men. Thirty-eight percent of patients presented with acute myocardial infarction and one-third of all PCI procedures were performed in an urgent or emergency setting. Non-invasive stress tests were performed in 13.9% of cases, while coronary computed tomography angiography was used in 13.7% of cases prior to PCI. Radial artery access was used in 56.1% of all PCI procedures. Devices that used PCI included drug-eluting stent, plain old balloon angioplasty, drug-eluting balloon, and bare-metal stent (around 91%, 19%, 6%, and 1% of all procedures, respectively). The incidences of in-hospital death, non-fatal myocardial infarction, and stroke were 2.3%, 1.6%, and 0.2%, respectively. These data may provide an overview of the current PCI practices and in-hospital outcomes in Korea and could be used as a foundation for developing treatment guidelines and nationwide clinical research.

Cancer risk in fathers and brothers of testicular cancer patients in Denmark. A population-based study.

PubMed

Westergaard, T; Olsen, J H; Frisch, M; Kroman, N; Nielsen, J W; Melbye, M

1996-05-29

There are several reports of familial testicular cancer in the literature but few systematic attempts have been made to estimate the risk of testicular cancer in first-degree relatives of patients with this neoplasm, and the risk remains to be fully assessed in population-based studies. By means of data from the Danish Cancer Registry, we identified all testicular cancer patients (index cases) born and diagnosed during 1950-1993 in Denmark. Their fathers were identified from national registries, as were the brothers of a subcohort of these patients. Familial cancer occurrence was determined through linkage with the cancer registry and compared with the cancer incidence in the general male population in Denmark. The ratio of observed to expected cancers generated the measure used for the relative risk. Fathers of 2,113 index cases with testicular cancer experienced an almost 2-fold risk of developing testicular cancer themselves (RR = 1.96; 95% CI: 1.01-3.43). Overall, the fathers had a decreased relative cancer risk (RR = 0.84; 95% CI: 0.74-0.95) with a significantly decreased risk of cancers of the lung and digestive organs. Brothers of a subcohort of 702 index cases showed a markedly increased risk of testicular cancer (RR = 12.3; 95% CI: 3.3-3 1.5). In conclusion, we documented a significantly increased familial risk of testicular cancer which was relatively more pronounced between brothers than between fathers and sons. These findings support the possible involvement of a genetic component in the aetiology of testicular cancer, but also leave room for a hypothesized influence of in-utero exposures, such as specific maternal hormone levels, that might be shared by brothers.

Improving Cardiac Surgical Site Infection Reporting and Prevention By Using Registry Data for Case Ascertainment.

PubMed

Nayar, Vaidehi; Kennedy, Andrea; Pappas, Janine; Atchley, Krista D; Field, Cynthia; Smathers, Sarah; Teszner, Eva E; Sammons, Julia S; Coffin, Susan E; Gerber, Jeffrey S; Spray, Thomas L; Steven, James M; Bell, Louis M; Forrer, Joan; Gonzalez, Fernando; Chi, Albert; Nieczpiel, William J; Martin, John N; Gaynor, J William

2016-01-01

The use of administrative data for surgical site infection (SSI) surveillance leads to inaccurate reporting of SSI rates [1]. A quality improvement (QI) initiative was conducted linking clinical registry and administrative databases to improve reporting and reduce the incidence of SSI [2]. At our institution, The Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) and infection surveillance database (ISD) were linked to the enterprise data warehouse containing electronic health record (EHR) billing data. A data visualization tool was created to (1) use the STS-CHSD for case ascertainment, (2) resolve discrepancies between the databases, and (3) assess impact of QI initiatives, including wound alert reports, bedside reviews, prevention bundles, and billing coder education. Over the 24-month study period, 1,715 surgical cases were ascertained according to the STS-CHSD clinical criteria, with 23 SSIs identified through the STS-CHSD, 20 SSIs identified through the ISD, and 32 SSIs identified through the billing database. The rolling 12-month STS-CHSD SSI rate decreased from 2.73% (21 of 769 as of January 2013) to 1.11% (9 of 813 as of December 2014). Thirty reporting discrepancies were reviewed to ensure accuracy. Workflow changes facilitated communication and improved adjudication of suspected SSIs. Billing coder education increased coding accuracy and narrowed variation between the 3 SSI sources. The data visualization tool demonstrated temporal relationships between QI initiatives and SSI rate reductions. Linkage of registry and infection control surveillance data with the EHR improves SSI surveillance. The visualization tool and workflow changes facilitated communication, SSI adjudication, and assessment of the QI initiatives. Implementation of these initiatives was associated with decreased SSI rates. Copyright © 2016 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

Femtosecond laser-assisted cataract surgeries reported to the European Registry of Quality Outcomes for Cataract and Refractive Surgery: Baseline characteristics, surgical procedure, and outcomes.

PubMed

Lundström, Mats; Dickman, Mor; Henry, Ype; Manning, Sonia; Rosen, Paul; Tassignon, Marie-José; Young, David; Stenevi, Ulf

2017-12-01

To describe a large cohort of femtosecond laser-assisted cataract surgeries in terms of baseline characteristics and the related outcomes. Eighteen cataract surgery clinics in 9 European countries and Australia. Prospective multicenter case series. Data on consecutive eyes having femtosecond laser-assisted cataract surgery in the participating clinics were entered in the European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO). A trained registry manager in each clinic was responsible for valid reporting to the EUREQUO. Demographics, preoperative corrected distance visual acuity (CDVA), risk factors, type of surgery, type of intraocular lens, visual outcomes, refractive outcomes, and complications were reported. Complete data were available for 3379 cases. The mean age was 64.4 years ± 10.9 (SD) and 57.8% (95% confidence interval [CI], 56.1-59.5) of the patients were women. A surgical complication was reported in 2.9% of all cases (95% CI, 2.4-3.5). The mean postoperative CDVA was 0.04 ± 0.15. logarithm of the minimum angle of resolution. A biometry prediction error (spherical equivalent) was within ±0.5 diopter in 71.8% (95% CI, 70.3-73.3) of all surgeries. Postoperative complications were reported in 3.3% (95% CI, 2.7-4.0). Patients with good preoperative CDVA had the best visual and refractive outcomes; patients with poor preoperative visual acuity had poorer outcomes. The visual and refractive outcomes of femtosecond laser-assisted cataract surgery were favorable compared with manual phacoemulsification. The outcomes were highly influenced by the preoperative visual acuity, but all preoperative CDVA groups had acceptable outcomes. Copyright © 2017 ASCRS and ESCRS. Published by Elsevier Inc. All rights reserved.

Prevalence and Incidence of Systemic Lupus Erythematosus in a Population-Based Registry of American Indian and Alaska Native People, 2007–2009

PubMed Central

Ferucci, Elizabeth D.; Johnston, Janet M.; Gaddy, Jasmine R.; Sumner, Lisa; Posever, James O.; Choromanski, Tammy L.; Gordon, Caroline; Lim, S. Sam; Helmick, Charles G.

2015-01-01

Objective Few studies have investigated the epidemiology of systemic lupus erythematosus (SLE) in American Indian and Alaska Native populations. The objective of this study was to determine the prevalence and incidence of SLE in the Indian Health Service (IHS) active clinical population in 3 regions of the US. Methods For this population-based registry within the IHS, the denominator consisted of individuals in the IHS active clinical population in 2007, 2008, and/or 2009 and residing in a community in 1 of 3 specified regions. Potential SLE cases were identified based on the presence of a diagnostic code for SLE or related disorder in the IHS National Data Warehouse. Detailed medical record abstraction was performed for each potential case. The primary case definition was documentation in the medical record of ≥4 of the revised American College of Rheumatology criteria for the classification of SLE. Prevalence was calculated for 2007, and the mean annual incidence was calculated for the years 2007 through 2009. Results The age-adjusted prevalence and incidence of SLE according to the primary definition were 178 per 100,000 person-years (95% confidence interval [95% CI] 157–200) and 7.4 per 100,000 person-years (95% CI 5.1–10.4). Among women, the age-adjusted prevalence was 271, and the age-adjusted incidence was 10.4. The prevalence was highest in women ages 50–59 years and in the Phoenix Area IHS. Conclusion The first population-based lupus registry in the US American Indian and Alaska Native population has demonstrated that the prevalence and incidence of SLE are high. Our estimates are as high as or higher than the rates reported in the US black population. PMID:24891315

Epidemiology and outcomes of pregnancy and obstetric complications in trauma in the United Kingdom.

PubMed

Battaloglu, Emir; McDonnell, Declan; Chu, Justin; Lecky, Fiona; Porter, Keith

2016-01-01

To understand the epidemiology of pregnancy and obstetric complications encountered in the management of pregnant trauma patients. Retrospective analysis of national trauma registry for recording of pregnancy status or obstetric complication in cases of trauma. Sub-division of patient cohort by severity of trauma and stage of pregnancy. Comparison of data sets between pregnant trauma patients and age-matched non-pregnant female trauma patients to determine patterns of injury and impact upon clinical outcomes. National registry data for the United Kingdom. For the five year period between 2009 and 2014, a total of 15,140 female patients, aged between 15 years old and 50 years old were identified within the trauma registry. A record of pregnancy was identified in 173 patients (1.14%) from within this cohort. Mechanisms of injury within the cohort of pregnant trauma patients saw increased rate of vehicular collision and interpersonal violence, especially penetrating trauma. Higher abbreviated injury scores were recorded for the abdominal region in pregnancy than in the non-pregnant cohort. Maternal mortality rates were seen to be higher, when compared with the non-pregnant trauma patient. Foetal survival rate from this series was 56% following trauma. Foetal death in pregnant trauma patients most frequently occurred in the 2nd trimester. No cases of isolated foetal survival were recorded following maternal trauma. Trauma to pregnant patients is rare in the United Kingdom, encountered in 1% of female trauma patients of child bearing age. Observations in altered mechanisms of injury and clinical outcomes were recorded. This provides useful information regarding the clinical management of pregnant trauma patients and offers potential areas to investigate to optimise their care, as well as to focus injury prevention measures. IV--Case series. Copyright © 2015 Elsevier Ltd. All rights reserved.

Birth characteristics and Wilms tumors in children in the Nordic countries: a register-based case-control study.

PubMed

Schüz, Joachim; Schmidt, Lisbeth Samsø; Kogner, Per; Lähteenmäki, Päivi M; Pal, Niklas; Stokland, Tore; Schmiegelow, Kjeld

2011-05-01

Little is known about causes of Wilms tumor. Because of the young age at diagnosis, several studies have looked at various birth characteristics. We conducted a registry-based case-control study involving 690 cases of Wilms tumor aged 0-14 years, occurring in Denmark, Finland, Norway or Sweden during 1985-2006, individually matched to five controls drawn randomly from the Nordic childhood population. Information on birth characteristics was obtained from the population-based medical birth registries. We estimated odds ratios (ORs) and 95% confidence intervals (CIs) using conditional logistic regression analysis. We observed a distinct association between Wilms tumor and high birth weight (≥4 kg) for girls (OR 1.97, CI 1.50-2.59) but not for boys (1.04, 0.78-1.38); overall, the OR was 1.43 (1.17-1.74). Among girls, risk increased by 28% (15-42%) per 500 g increase in birth weight. Large-for-gestational age girls also had a higher risk (2.48, 1.51-4.05), whereas no effect was seen for boys (1.12, 0.60-2.07). An association was seen with Apgar score at 5 min < 7 for both sexes combined (5.13, 2.55-10.3). ORs close to unity were seen for parental age and birth order. In our large-scale, registry-based study, we confirmed earlier observations of an association between high birth weight and risk of Wilms tumor, but we found an effect only in girls. The higher risk of infants with low Apgar score might reflect hypoxia causing cell damage, adverse side effects of neonatal treatment or reverse causation as low Apgar score might indicate the presence of a tumor. Copyright © 2010 UICC.

Rectal squamous cell carcinoma in immunosuppressed populations: is this a distinct entity from anal cancer?

PubMed Central

COGHILL, Anna E.; SHIELS, Meredith S.; RYCROFT, Randi K.; COPELAND, Glenn; FINCH, Jack L.; HAKENEWERTH, Anne M.; PAWLISH, Karen S.; ENGELS, Eric A.

2015-01-01

Objective Squamous cell carcinoma (SCC) of the rectum is rare, but as with anal cancer, risk may be increased among immunosuppressed individuals. We assessed risk of rectal SCC in HIV-infected people. Design Population-based registry Methods We utilized the HIV/AIDS Cancer Match, a linkage of US HIV and cancer registries (1991–2010), to ascertain cases of anal SCC, rectal SCC, rectal non-SCC, and colon non-SCC. We compared risk in HIV-infected persons to the general population using standardized incidence ratios (SIRs) and evaluated risk factors using Poisson regression. We reviewed cancer registry case notes to confirm site and histology for a subset of cases. Results HIV-infected persons had an excess risk of rectal SCC compared to the general population (SIR=28.9; 95%CI 23.2–35.6), similar to the increase for anal SCC (SIR=37.3). Excess rectal SCC risk was most pronounced among HIV-infected men who have sex with men (MSM, SIR=61.2). Risk was not elevated for rectal non-SCC (SIR=0.88) or colon non-SCC (SIR=0.63). Individuals diagnosed with AIDS had higher rectal SCC rates than those with HIV-only (incidence rate ratio=1.86; 95%CI 1.04–3.31). Based on available information, one-third of rectal SCCs were determined to be misclassified anal cancer. Conclusions HIV-infected individuals, especially with advanced immunosuppression, appear to have substantially elevated risk for rectal SCC. As for anal SCC, rectal SCC risk was highest in MSM, pointing to involvement of a sexually transmitted infection such as human papillomavirus. Site misclassification was present, and detailed information on tumor location is needed to prove that rectal SCC is a distinct entity. PMID:26372482

Construction of a North American Cancer Survival Index to Measure Progress of Cancer Control Efforts

PubMed Central

Weir, Hannah K; Mariotto, Angela; Wilson, Reda; Nishri, Diane

2017-01-01

Introduction Population-based cancer survival data provide insight into the effectiveness of health care delivery. Comparing survival for all cancer sites combined is challenging, because the primary cancer site and age distribution of patients may differ among areas or change over time. Cancer survival indices (CSIs) are summary measures of survival for cancers of all sites combined and are used in England and Europe to monitor temporal trends and examine geographic differences in survival. We describe the construction of the North American Cancer Survival Index and demonstrate how it can be used to compare survival by geographic area and by race. Methods We used data from 36 US cancer registries to estimate relative survival ratios for people diagnosed with cancer from 2006 through 2012 to create the CSI: the weighted sum of age-standardized, site-specific, relative survival ratios, with weights derived from the distribution of incident cases by sex and primary site from 2006 through 2008. The CSI was calculated for 32 registries for all races, 31 registries for whites, and 12 registries for blacks. Results The survival estimates standardized by age only versus age-, sex-, and site-standardized (CSI) were 64.1% (95% confidence interval [CI], 64.1%–64.2%) and 63.9% (95% CI, 63.8%–63.9%), respectively, for the United States for all races combined. The inter-registry ranges in unstandardized and CSI estimates decreased from 12.3% to 5.0% for whites, and from 5.4% to 3.9% for blacks. We found less inter-registry variation in CSI estimates than in unstandardized all-sites survival estimates, but disparities by race persisted. Conclusions CSIs calculated for different jurisdictions or periods are directly comparable, because they are standardized by age, sex, and primary site. A national CSI could be used to measure temporal progress in meeting public health objectives, such as Healthy People 2030. PMID:28910593

The Italian Registry of Antiphospholipid Antibodies.

PubMed

Finazzi, G

1997-01-01

The clinical importance of antiphospholipid antibodies (APA) derives from their association with a syndrome of venous and arterial thrombosis, recurrent fetal loss and thrombocytopenia known as the antiphospholipid syndrome (APS). The Italian Registry of Antiphospholipid Antibodies was set up in 1989 for the purpose of collecting a large number of patients with lupus anticoagulant (LA) or anticardiolipin antibodies (ACA) for clinical studies in order to obtain more information on the clinical features of APS. The Italian Registry has completed two clinical studies and proposed an international trial on the treatment of APS patients. These activities of the Registry are reviewed herein. Additional information has been obtained from pertinent articles and abstracts published in journals covered by the Science Citation Index and Medline. The first study of the Registry was a retrospective analysis of enrolled patients which showed that: a) the prevalence of thrombosis and thrombocytopenia was similar in cases with idiopathic APA or APA secondary to systemic lupus erythematosus, and b) the rate of thrombosis was significantly reduced in patients with severe thrombocytopenia but not in those with only a mild reduction of the platelet count. The second study was a prospective survey of the natural history of the disease, showing that a) previous thrombosis and ACA titer > 40 units were independent predictors of subsequent vascular complications; b) a history of miscarriage or thrombosis is significantly associated with adverse pregnancy outcome; c) hematological malignancies can develop during follow-up and patients with APA should be considered at increased risk of developing NHL. Thus the possibility of a hematologic neoplastic disease should be borne in mind in the initial evaluation and during the follow-up of these patients. The latest initiative of the Registry was the proposal of an international, randomized clinical trial (WAPS study) aimed at assessing the efficacy and safety of high-dose warfarin in preventing recurrent thrombosis in patients with APA and vascular disease. The study is scheduled to start in March 1997.

Impact of clinical registries on quality of patient care and health outcomes: protocol for a systematic review.

PubMed

Hoque, Dewan Md Emdadul; Kumari, Varuni; Ruseckaite, Rasa; Romero, Lorena; Evans, Sue M

2016-04-26

Many developed countries have regional and national clinical registries aimed at improving health outcomes of patients diagnosed with particular diseases or cared for in particular healthcare settings. Clinical quality registries (CQRs) are clinical registries established with the purpose of monitoring quality of care and providing feedback to improve health outcomes. The aim of this systematic review is to understand the impact of CQRs on (1) mortality/survival; (2) measures of outcome that reflect a process or outcome of healthcare; (3) healthcare utilisation and (4) costs. The PRISMA-P methodology, checklist and standard strategy using predefined inclusion and exclusion criteria and structured data abstraction tools will be followed. A search of the electronic databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and CINAHL will be undertaken, in addition to Google Scholar and grey literature, to identify studies in English covering the period January 1980 to December 2014. Case-control, cohort, randomised controlled trials and controlled clinical trials which describe the registry as an intervention will be eligible for inclusion. Narrative synthesis of study findings will be conducted, guided by a conceptual framework developed to analyse the outcome measure of the registry using defined criteria. If sufficient studies are identified with a similar outcome of interest and measure using the same comparator and time of interval, results will be pooled for random-effects meta-analysis. Test for heterogeneity and sensitivity analysis will be conducted. To identify reporting bias, forest plots and funnel plots will be created and, if required, Egger's test will be conducted. Ethical approval is not required as primary data will not be collected. Review results will be published as a part of thesis, peer-reviewed journal and conferences. CRD42015017319. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Characteristics of national registries for occupational diseases: international development and validation of an audit tool (ODIT).

PubMed

Spreeuwers, Dick; de Boer, Angela G E M; Verbeek, Jos H A M; van Dijk, Frank J H

2009-10-23

The aim of the study was to develop quality indicators that can be used for quality assessment of registries of occupational diseases in relation to preventive policy on a national level. The research questions were: 1. Which indicators determine the quality of national registries of occupational diseases with respect to their ability to provide appropriate information for preventive policy? 2. What are the criteria that can distinguish low quality from high quality? First, we performed a literature search to assess which output of registries can be considered appropriate for preventive policy and to develop a set of preliminary indicators and criteria. Second, final indicators and criteria were assessed and their content validity was tested in a Delphi study, for which experts from the 25 EU Member States were invited. The literature search revealed two different types of information output to be appropriate for preventive policy: monitor and alert information. For the evaluation of the quality of the monitor and alert function we developed ten indicators and criteria. Sixteen of the twenty-five experts responded in the first round of the Delphi study, and eleven in the second round. Based on their comments, we assessed the final nine indicators: the completeness of the notification form, coverage of registration, guidelines or criteria for notification, education and training of reporting physicians, completeness of registration, statistical methods used, investigation of special cases, presentation of monitor information, and presentation of alert information. Except for the indicator "coverage of registration" for the alert function, all the indicators met the preset requirements of content validity. We have developed quality indicators and criteria to evaluate registries for occupational diseases on the ability to provide appropriate information for preventive policy on a national level. Together, these indicators form a tool which can be used for quality improvement of registries of occupational diseases.

Validation of a case definition to define chronic dialysis using outpatient administrative data.

PubMed

Clement, Fiona M; James, Matthew T; Chin, Rick; Klarenbach, Scott W; Manns, Braden J; Quinn, Robert R; Ravani, Pietro; Tonelli, Marcello; Hemmelgarn, Brenda R

2011-03-01

Administrative health care databases offer an efficient and accessible, though as-yet unvalidated, approach to studying outcomes of patients with chronic kidney disease and end-stage renal disease (ESRD). The objective of this study is to determine the validity of outpatient physician billing derived algorithms for defining chronic dialysis compared to a reference standard ESRD registry. A cohort of incident dialysis patients (Jan. 1-Dec. 31, 2008) and prevalent chronic dialysis patients (Jan 1, 2008) was selected from a geographically inclusive ESRD registry and administrative database. Four administrative data definitions were considered: at least 1 outpatient claim, at least 2 outpatient claims, at least 2 outpatient claims at least 90 days apart, and continuous outpatient claims at least 90 days apart with no gap in claims greater than 21 days. Measures of agreement of the four administrative data definitions were compared to a reference standard (ESRD registry). Basic patient characteristics are compared between all 5 patient groups. 1,118,097 individuals formed the overall population and 2,227 chronic dialysis patients were included in the ESRD registry. The three definitions requiring at least 2 outpatient claims resulted in kappa statistics between 0.60-0.80 indicating "substantial" agreement. "At least 1 outpatient claim" resulted in "excellent" agreement with a kappa statistic of 0.81. Of the four definitions, the simplest (at least 1 outpatient claim) performed comparatively to other definitions. The limitations of this work are the billing codes used are developed in Canada, however, other countries use similar billing practices and thus the codes could easily be mapped to other systems. Our reference standard ESRD registry may not capture all dialysis patients resulting in some misclassification. The registry is linked to on-going care so this is likely to be minimal. The definition utilized will vary with the research objective.

Modest familial risks for multiple sclerosis: a registry-based study of the population of Sweden

PubMed Central

Westerlind, Helga; Ramanujam, Ryan; Uvehag, Daniel; Kuja-Halkola, Ralf; Boman, Marcus; Bottai, Matteo; Lichtenstein, Paul

2014-01-01

Data on familial recurrence rates of complex diseases such as multiple sclerosis give important hints to aetiological factors such as the importance of genes and environment. By linking national registries, we sought to avoid common limitations of clinic-based studies such as low numbers, poor representation of the population and selection bias. Through the Swedish Multiple Sclerosis Registry and a nationwide hospital registry, a total of 28 396 patients with multiple sclerosis were identified. We used the national Multi-Generation Registry to identify first and second degree relatives as well as cousins, and the Swedish Twin Registry to identify twins of patients with multiple sclerosis. Crude and age corrected familial risks were estimated for cases and found to be in the same range as previously published figures. Matched population-based controls were used to calculate relative risks, revealing lower estimates of familial multiple sclerosis risks than previously reported, with a sibling recurrence risk (λs = 7.1; 95% confidence interval: 6.42–7.86). Surprisingly, despite a well-established lower prevalence of multiple sclerosis amongst males, the relative risks were equal among maternal and paternal relations. A previously reported increased risk in maternal relations could thus not be replicated. An observed higher transmission rate from fathers to sons compared with mothers to sons suggested a higher transmission to offspring from the less prevalent sex; therefore, presence of the so-called ‘Carter effect’ could not be excluded. We estimated the heritability of multiple sclerosis using 74 757 twin pairs with known zygosity, of which 315 were affected with multiple sclerosis, and added information from 2.5 million sibling pairs to increase power. The heritability was estimated to be 0.64 (0.36–0.76), whereas the shared environmental component was estimated to be 0.01 (0.00–0.18). In summary, whereas multiple sclerosis is to a great extent an inherited trait, the familial relative risks may be lower than usually reported. PMID:24441172

Improving Interoperability between Registries and EHRs

PubMed Central

Blumenthal, Seth

2018-01-01

National performance measurement needs clinical data that track the performance of multi disciplinary teams across episodes of care. Clinical registries are ideal platforms for this work due to their capture of structured, specific data across specialties. Because registries collect data at a national level, and registry data are captured in a consistent structure and format within each registry, registry data are useful for measurement and analysis “out of the box”. Registry business models are hampered by the cost of collecting data from EHRs and other source systems and abstracting or mapping them to fit registry data models. The National Quality Registry Network (NQRN) has launched Registries on FHIR, an initiative to lower barriers to achieving semantic interoperability between registries and source data systems. In 2017 Registries on FHIR conducted an information gathering campaign to learn where registries want better interoperability, and how to go about improving it. PMID:29888033

Decline of neural tube defects cases after a folic acid campaign in Nuevo León, México.

PubMed

Martínez de Villarreal, Laura; Pérez, Jesús Z Villarreal; Vázquez, Patricia Arredondo; Herrera, Ricardo Hernández; Campos, Ma Del Roble Velazco; López, Roberto Ambriz; Ramírez, José Luis Herrera; Sánchez, Jesús Manuel Yañez; Villarreal, Juan José Morales; Garza, Manuel Treviño; Limón, Adriana; López, Abel Guzmán; Bárcenas, Mario; García, Juan Ramón Cepeda; Domínguez, Andrés Sánchez; Nuñez, Rogelio Hernández; Ayala, Jorge Luis García; Martínez, Jorge Garza; González, Mario Tijerina; Alvarez, Carlos García; Castro, Roberto Negrete

2002-11-01

Nuevo León is a state in northeastern Mexico, near the border of Texas. Mean mortality rate from 1996-98 due to anencephaly cases was 0.6/1,000. In 1999 a surveillance program for the registry and prevention of neural tube defects (NTD) cases was initiated. Cases were obtained from hospitals and OB-GYN clinics by immediate notification, death certificates, or fetal death registries. Only isolated cases of NTD were included. In August 1999 a folic acid campaign was initiated with the free distribution of the vitamin to low-income women with a recommendation to take a 5.0-mg pill once a week. Number of cases and rates from 1999 to 2001 were compared (chi(2) test). After 2 years there has been a significant reduction in the number of cases and rates. In 1999 there were 95 NTD cases and in the years 2000 and 2001 there were only 59 and 55 respectively (P < 0.001). NTD rate decreased from 1.04/1,000 in 1999 to 0.58/1,000 in 2001. Anencephaly and spina bifida rates decreased from 0.55/1,000 to 0.29/1,000 and from 0.47/1,000 to 0.22/1,000 respectively, from 1999-2001. Decrease of female cases was higher than male cases for both phenotypes. After 2 years there was a 50% decrease in the incidence of anencephaly and spina bifida cases with a significant reduction of infant mortality and disability. These results encourage us to propose the use of a single tablet of 5.0-mg of folic acid per week as an alternative to supplementation on a daily basis. Copyright 2002 Wiley-Liss, Inc.

Analysis of Stage and Clinical/Prognostic Factors for Lung Cancer from SEER Registries: AJCC Staging and Collaborative Stage Data Collection System

PubMed Central

Chen, Vivien W.; Ruiz, Bernardo A.; Hsieh, Mei-Chin; Wu, Xiao-Cheng; Ries, Lynn; Lewis, Denise R.

2014-01-01

Introduction The American Joint Committee on Cancer (AJCC) 7th edition introduced major changes in the staging of lung cancer, including Tumor (T), Node (N), Metastasis (M) (TNM) system and new stage/prognostic site-specific factors (SSFs), collected under the Collaborative Stage Version 2 (CSv2) Data Collection System. The intent was to improve the stage precision which could guide treatment options and ultimately lead to better survival. This report examines stage trends, the change in stage distributions from the AJCC 6th to the 7th edition, and findings of the prognostic SSFs for 2010 lung cancer cases. Methods Data were from the November 2012 submission of 18 Surveillance, Epidemiology, and End Results (SEER) Program population-based registries. A total of 344 797 cases of lung cancer, diagnosed in 2004–2010, were analyzed. Results The percentages of small tumors and early stage lung cancer cases increased from 2004 to 2010. The AJCC 7th edition, implemented for 2010 diagnosis year, subclassified tumor size and reclassified multiple tumor nodules, pleural effusions, and involvement of tumors in the contralateral lung, resulting in a slight decrease in stage IB and stage IIIB and a small increase in stage IIA and stage IV. Overall about 80% of cases remained the same stage group in AJCC 6th and 7th editions. About 21% of lung cancer patients had separate tumor nodules in the ipsilateral (same) lung, and 23% of the surgically resected patients had visceral pleural invasion, both adverse prognostic factors. Conclusion It is feasible for high quality population-based registries such as the SEER Program to collect more refined staging and prognostic SSFs that allows better categorization of lung cancer patients with different clinical outcomes and to assess their survival. PMID:25412390

Prevalence and Survival Patterns of Patients with Bone Metastasis from Common Cancers in Thailand.

PubMed

Phanphaisarn, Areerak; Patumanond, Jayantorn; Settakorn, Jongkolnee; Chaiyawat, Parunya; Klangjorhor, Jeerawan; Pruksakorn, Dumnoensun

2016-01-01

Bone metastasis is a single condition but presents with various patterns and severities. Skeletal- related events (SREs) deteriorate overall performance status and reduce quality of life. However, guidelines for early detection and management are limited. This study includes a survey of the prevalence of bone metastasis in cases with common cancers in Thailand as well as a focus on survival patterns and SREs. A retrospective cohort analysis was conducted using a database of the Chiang Mai Cancer Registry and the Musculoskeletal Tumor Registry of the OLARN Center, Chiang Mai University. The prevalence of bone metastasis from each type of primary cancer was noted and time-to-event analysis was performed to estimate cancer survival rates after bone metastasis. There were 29,447 cases of the ten most common cancers in Thailand, accounting for 82.2% of the entire cancer registry entries during the study period. Among those cases, there were 2,263 with bone metastases, accounting for 7.68% of entries. Bone metastasis from lung, liver, breast, cervix and prostate are common in the Thai population, accounting for 83.4% of all positive cases. The median survival time of all was 6 months. Of the bone metastases, 48.9% required therapeutic intervention, including treatment of spinal cord and nerve root compression, pathological fractures, and bone pain. The frequency of the top five types of bone metastasis in Thailand were different from the frequencies in other countries, but corresponded to the relative prevalence of the cancers in Thailand and osteophilic properties of each cancer. The results of this study support the establishment of country specific guidelines for primary cancer identification with skeletal lesions of unknown origin. In addition, further clinical studies of the top five bone metastases should be performed to develop guidelines for optimal patient management during palliative care.

A registry-based follow-up study, comparing the incidence of cardiovascular disease in native Danes and immigrants born in Turkey, Pakistan and the former Yugoslavia: do social inequalities play a role?

PubMed Central

2011-01-01

Background This study compared the incidence of cardiovascular disease (CVD) and acute myocardial infarction (AMI) between native Danes and immigrants born in Turkey, Pakistan and the former Yugoslavia. Furthermore, we examined whether different indicators of socioeconomic status (SES), such as employment, income and housing conditions influenced potential differences. Methods In this registry-based follow-up study individuals were identified in a large database that included individuals from two major regions in Denmark, corresponding to about 60% of the Danish population. Incident cases of CVD and AMI included fatal and non-fatal events and were taken from registries. Using Cox regression models, we estimated incidence rates at 5-year follow-up. Results Immigrant men and women from Turkey and Pakistan had an increased incidence of CVD, compared with native Danish men. In the case of AMI, a similar pattern was observed; however, differences were more pronounced. Pakistanis and Turks with a shorter duration of residence had a lower incidence, compared with those of a longer residence. Generally, no notable differences were observed between former Yugoslavians and native Danes. In men, differences in CVD and AMI were reduced after adjustment for SES, in particular, among Turks regarding CVD. In women, effects were particularly reduced among Yugoslavians in the case of CVD and in Turks in the case of CVD and AMI after adjustment for SES. Conclusions In conclusion, country of birth-related differences in the incidence of CVD and AMI were observed. At least some of the differences that we uncovered were results of a socioeconomic effect. Duration of residence also played a certain role. Future studies should collect and test different indicators of SES in studies of CVD among immigrants. PMID:21861890

Drug utilization, safety, and effectiveness of exenatide, sitagliptin, and vildagliptin for type 2 diabetes in the real world: data from the Italian AIFA Anti-diabetics Monitoring Registry.

PubMed

Montilla, S; Marchesini, G; Sammarco, A; Trotta, M P; Siviero, P D; Tomino, C; Melchiorri, D; Pani, L

2014-12-01

In Italy, the reimbursed use of incretin mimetics and incretin enhancers was subject to enrollment of patients into a web-based system recording the general demographic and clinical data of patients. We report the utilization data of glucagon-like peptide 1 (GLP1) receptor agonists and dipeptidylpeptidase-4 (DPP4) inhibitors in clinical practice as recorded by the Italian Medicines Agency (AIFA) Monitoring Registry. From February 2008 to August 2010, 75,283 patients with type 2 diabetes were entered into the registry and treated with exenatide, sitagliptin, or vildagliptin. The treatment was administered to patients in a wide range of ages (≥75 years, n = 6125 cases), body mass index (BMI) (≥35 kg/m(2), n = 22,015), and metabolic control (HbA(1c) ≥ 11% ((96 mmol/mol), n = 3151). Overall, 1116 suspected adverse drug reactions were registered, including 12 cases of acute pancreatitis (six on exenatide). Hypoglycemic episodes mainly occurred in combination with sulfonylureas. Treatment discontinuation for the three drugs (logistic regression analysis) was negatively associated with the male gender and positively with baseline HbA1c, diabetes duration, and, limitedly to DPP-4 inhibitors, with BMI. Treatment discontinuation (including loss to follow-up, accounting for 21-26%) was frequent. Discontinuation for treatment failure occurred in 7.7% of cases (exenatide), 3.8% (sitagliptin), and 4.1% (vildagliptin), respectively, corresponding to 27-40% of all discontinuations, after excluding lost to follow-up. HbA1c decreased on average by 0.9-1.0% (9 mmol/mol). Body weight decreased by 3.5% with exenatide and by 1.0-1.5% with DPP-4 inhibitors. In the real world of Italian diabetes centers, prescriptions of incretins have been made in many cases outside the regulatory limits. Nevertheless, when appropriately utilized, incretins may grant results at least in line with pivotal trials. Copyright © 2014 Elsevier B.V. All rights reserved.

Reusability of coded data in the primary care electronic medical record: A dynamic cohort study concerning cancer diagnoses.

PubMed

Sollie, Annet; Sijmons, Rolf H; Helsper, Charles; Numans, Mattijs E

2017-03-01

To assess quality and reusability of coded cancer diagnoses in routine primary care data. To identify factors that influence data quality and areas for improvement. A dynamic cohort study in a Dutch network database containing 250,000 anonymized electronic medical records (EMRs) from 52 general practices was performed. Coded data from 2000 to 2011 for the three most common cancer types (breast, colon and prostate cancer) was compared to the Netherlands Cancer Registry. Data quality is expressed in Standard Incidence Ratios (SIRs): the ratio between the number of coded cases observed in the primary care network database and the expected number of cases based on the Netherlands Cancer Registry. Ratios were multiplied by 100% for readability. The overall SIR was 91.5% (95%CI 88.5-94.5) and showed improvement over the years. SIRs differ between cancer types: from 71.5% for colon cancer in males to 103.9% for breast cancer. There are differences in data quality (SIRs 76.2% - 99.7%) depending on the EMR system used, with SIRs up to 232.9% for breast cancer. Frequently observed errors in routine healthcare data can be classified as: lack of integrity checks, inaccurate use and/or lack of codes, and lack of EMR system functionality. Re-users of coded routine primary care Electronic Medical Record data should be aware that 30% of cancer cases can be missed. Up to 130% of cancer cases found in the EMR data can be false-positive. The type of EMR system and the type of cancer influence the quality of coded diagnosis registry. While data quality can be improved (e.g. through improving system design and by training EMR system users), re-use should only be taken care of by appropriately trained experts. Copyright © 2016. Published by Elsevier B.V.

Subtypes and case-fatality rates of stroke: a hospital-based stroke registry in Taiwan (SCAN-IV).

PubMed

Jeng, J S; Lee, T K; Chang, Y C; Huang, Z S; Ng, S K; Chen, R C; Yip, P K

1998-04-01

Stroke data bank can afford important information regarding risk factors, pathogenesis, prognosis, etc. By means of hospital-based stroke registry, we investigated the risk factors and case-fatality rates in different types of stroke and transient ischemic attack (TIA) patients at the National Taiwan University Hospital in 1995. After excluding ineligible patients, 995 patients aged 1-98 years (575 men and 420 women) were recruited. Men predominated in all age groups for stroke and TIA in general except for cerebral hemorrhage (CH) in patients aged < 35 years and subarachnoid hemorrhage (SAH) in patients aged > or = 45 years. Of these, 676 (67.9%), 41 (4.1%), 228 (22.9%) and 50 (5%) patients were classified in the categories of cerebral infarction (CI), TIA, CH and SAH, respectively. The CI/CH ratio was 2.96. Hypertension remained one of the most important risk factors for CI, CH and TIA patients. Severe extracranial carotid artery stenosis (> or = 50%) was found in 12% of the CI patients and 27% of the TIA patients, but not found in the CH and SAH patients. Of these patients, the 30-day case-fatality rate was 10.9%, highest in SAH (30%), followed by CH (24.1%) and CI (5.6%). There were 41 in-hospital stroke patients who had significantly higher case-fatality rates than the other stroke patients (P<0.001 for all stroke, CI and CH patients by chi2 test). As compared to the previous stroke registries in Taiwan, there is a secular trend of increasing CI/CH ratios. These findings in Taiwan were compared with those in other populations, including other Asian, Caucasian and black populations. The CI/CH ratios in Asian populations, including Chinese, Japanese and Korean, were much lower than those in Caucasian and black populations. Dietary, environmental and genetic factors probably play important roles in these differences.

US assessment of HPV types in cancers: implications for current and 9-valent HPV vaccines.

PubMed

Saraiya, Mona; Unger, Elizabeth R; Thompson, Trevor D; Lynch, Charles F; Hernandez, Brenda Y; Lyu, Christopher W; Steinau, Martin; Watson, Meg; Wilkinson, Edward J; Hopenhayn, Claudia; Copeland, Glenn; Cozen, Wendy; Peters, Edward S; Huang, Youjie; Saber, Maria Sibug; Altekruse, Sean; Goodman, Marc T

2015-06-01

This study sought to determine the prevaccine type-specific prevalence of human papillomavirus (HPV)-associated cancers in the United States to evaluate the potential impact of the HPV types in the current and newly approved 9-valent HPV vaccines. The Centers for Disease Control and Prevention partnered with seven US population-based cancer registries to obtain archival tissue for cancers diagnosed from 1993 to 2005. HPV testing was performed on 2670 case patients that were fairly representative of all participating cancer registry cases by age and sex. Demographic and clinical data were evaluated by anatomic site and HPV status. Current US cancer registry data and the detection of HPV types were used to estimate the number of cancers potentially preventable through vaccination. HPV DNA was detected in 90.6% of cervical, 91.1% of anal, 75.0% of vaginal, 70.1% of oropharyngeal, 68.8% of vulvar, 63.3% of penile, 32.0% of oral cavity, and 20.9% of laryngeal cancers, as well as in 98.8% of cervical cancer in situ (CCIS). A vaccine targeting HPV 16/18 potentially prevents the majority of invasive cervical (66.2%), anal (79.4%), oropharyngeal (60.2%), and vaginal (55.1%) cancers, as well as many penile (47.9%), vulvar (48.6%) cancers: 24 858 cases annually. The 9-valent vaccine also targeting HPV 31/33/45/52/58 may prevent an additional 4.2% to 18.3% of cancers: 3944 cases annually. For most cancers, younger age at diagnosis was associated with higher HPV 16/18 prevalence. With the exception of oropharyngeal cancers and CCIS, HPV 16/18 prevalence was similar across racial/ethnic groups. In the United States, current vaccines will reduce most HPV-associated cancers; a smaller additional reduction would be contributed by the new 9-valent vaccine. Published by Oxford University Press 2015. This work is written by (a) US Government employee(s) and is in the public domain in the US.

US Assessment of HPV Types in Cancers: Implications for Current and 9-Valent HPV Vaccines

PubMed Central

Unger, Elizabeth R.; Thompson, Trevor D.; Lynch, Charles F.; Hernandez, Brenda Y.; Lyu, Christopher W.; Steinau, Martin; Watson, Meg; Wilkinson, Edward J.; Hopenhayn, Claudia; Copeland, Glenn; Cozen, Wendy; Peters, Edward S.; Huang, Youjie; Saber, Maria Sibug; Altekruse, Sean; Goodman, Marc T.

2015-01-01

Background: This study sought to determine the prevaccine type-specific prevalence of human papillomavirus (HPV)–associated cancers in the United States to evaluate the potential impact of the HPV types in the current and newly approved 9-valent HPV vaccines. Methods: The Centers for Disease Control and Prevention partnered with seven US population-based cancer registries to obtain archival tissue for cancers diagnosed from 1993 to 2005. HPV testing was performed on 2670 case patients that were fairly representative of all participating cancer registry cases by age and sex. Demographic and clinical data were evaluated by anatomic site and HPV status. Current US cancer registry data and the detection of HPV types were used to estimate the number of cancers potentially preventable through vaccination. Results: HPV DNA was detected in 90.6% of cervical, 91.1% of anal, 75.0% of vaginal, 70.1% of oropharyngeal, 68.8% of vulvar, 63.3% of penile, 32.0% of oral cavity, and 20.9% of laryngeal cancers, as well as in 98.8% of cervical cancer in situ (CCIS). A vaccine targeting HPV 16/18 potentially prevents the majority of invasive cervical (66.2%), anal (79.4%), oropharyngeal (60.2%), and vaginal (55.1%) cancers, as well as many penile (47.9%), vulvar (48.6%) cancers: 24 858 cases annually. The 9-valent vaccine also targeting HPV 31/33/45/52/58 may prevent an additional 4.2% to 18.3% of cancers: 3944 cases annually. For most cancers, younger age at diagnosis was associated with higher HPV 16/18 prevalence. With the exception of oropharyngeal cancers and CCIS, HPV 16/18 prevalence was similar across racial/ethnic groups. Conclusions: In the United States, current vaccines will reduce most HPV-associated cancers; a smaller additional reduction would be contributed by the new 9-valent vaccine. PMID:25925419

Molecular Biology and Prevention of Endometrial Cancer

DTIC Science & Technology

2009-07-01

us time to complete the study. Aim 2: To analyze vaginal and cervical adenocarcinomas , that have arisen in women exposed to DES in- utero , for...therapy. Methods: 1) Oligonucleotide microarray analysis was performed on a panel of endometrial cancers. 2) A subset of adenocarcinoma cases...from the International DES Registry (IDESR) was analyzed for MSI 3) A case-control study of the CASH database was performed to evaluate the

Office-Based Anesthesia: Safety and Outcomes in Pediatric Dental Patients

PubMed Central

Spera, Allison L.; Saxen, Mark A.; Yepes, Juan F.; Jones, James E.; Sanders, Brian J.

2017-01-01

The number of children with caries requiring general anesthesia to achieve comprehensive dental care and the demand for dentist anesthesiologists to provide ambulatory anesthesia for these patients is increasing. No current published studies examine the safety and outcomes of ambulatory anesthesia performed by dentist anesthesiologists for dental procedures in pediatric patients, and there is no national requirement for reporting outcomes of these procedures. In 2010, the Society for Ambulatory Anesthesia Clinical Outcomes Registry was developed. This Web-based database allows providers of ambulatory anesthesia to track patient demographics and various outcomes of procedures. Our study is a secondary analysis of data collected in the registry over a 4-year period, 2010–2014. Of the 7041 cases reviewed, no cases resulted in serious complications, including death, anaphylaxis, aspiration, cardiovascular adverse events, or neurologic adverse events. Of the 7041 cases reviewed, 196 (3.0%) resulted in a predischarge or postdischarge adverse event. The predischarge adverse event occurring with the highest frequency was laryngospasm, occurring in 35 cases (0.50%). The postdischarge adverse event occurring with the highest frequency was nausea, reported by 99 patients (5.0%). This study provides strong clinical outcomes data to support the safety of office-based anesthesia as performed by dentist anesthesiologists in the treatment of pediatric dental patients. PMID:28858554

Recruiting Hispanic women for a population-based study: validity of surname search and characteristics of nonparticipants.

PubMed

Sweeney, Carol; Edwards, Sandra L; Baumgartner, Kathy B; Herrick, Jennifer S; Palmer, Leslie E; Murtaugh, Maureen A; Stroup, Antoinette; Slattery, Martha L

2007-11-15

Conducting research on the health of Hispanic populations in the United States entails challenges of identifying individuals who are Hispanic and obtaining good study participation. In this report, identification of Hispanics using a surname search and ethnicity information collected by cancer registries was validated, compared with self-report, for breast cancer cases and controls in Utah and New Mexico. Factors influencing participation by Hispanics in a study interview in 2000-2005 were evaluated. The positive predictive value of identification as Hispanic by cancer registry records and surname search was 82.3% for cases and 73.2% for controls. Hispanics who were correctly classified differed from those who were misclassified, reporting lower language acculturation and educational attainment. Older age was positively associated with success in contacting Hispanic controls (p(trend) < 0.0001) but negatively associated with cooperation with the interview (p(trend) < 0.0001). Community characteristics described by US Census data, including income, education, and urban/rural residence, did not significantly influence participation by Hispanic cases or controls. The authors conclude that a surname search efficiently identifies Hispanics, although individuals identified using this method are not completely representative. Recruitment of Hispanic cases and controls does not appear to be affected by selection bias related to community characteristics.

Sex and Geographic Differences in the Prevalence of Reported Childhood Motor Disability and Their Trends in Taiwan.

PubMed

Tsai, Cheng-Fang; Guo, How-Ran; Tseng, Yen-Cheng; Lai, Der-Chung

2018-01-01

Motor disability (MD) is not uncommon in children, but data at the national level are scarce. As the Taiwan government certifies and registers disabled residents for providing services on a routine basis, the registry provides a unique opportunity for studying MD. Using data from the registry, we calculated the prevalence of MD by age, sex, and geographic area and assessed the changes from 2004 to 2010. We excluded cases under 3 years old because the government discourages the certification at this age. We found that cases between 3 and 17 years old decreased from 8187 to 6022 per year from 2004 to 2010 and the prevalence generally decreased every year in all age groups. There were more boy cases than girl cases every year, and the prevalence rate ratios ranged from 1.26 to 1.39 ( p < 0.05 in all years), with a decreasing trend over time ( p < 0.01). Rural areas had higher prevalence in all the years, and the prevalence rate ratio decreased from 1.31 to 1.23 ( p < 0.05 in all years), with a decreasing trend over time ( p < 0.05). Further studies identifying the risk factors contributing to the decreases might help in the prevention of MD in the future.

Office-Based Anesthesia: Safety and Outcomes in Pediatric Dental Patients.

PubMed

Spera, Allison L; Saxen, Mark A; Yepes, Juan F; Jones, James E; Sanders, Brian J

The number of children with caries requiring general anesthesia to achieve comprehensive dental care and the demand for dentist anesthesiologists to provide ambulatory anesthesia for these patients is increasing. No current published studies examine the safety and outcomes of ambulatory anesthesia performed by dentist anesthesiologists for dental procedures in pediatric patients, and there is no national requirement for reporting outcomes of these procedures. In 2010, the Society for Ambulatory Anesthesia Clinical Outcomes Registry was developed. This Web-based database allows providers of ambulatory anesthesia to track patient demographics and various outcomes of procedures. Our study is a secondary analysis of data collected in the registry over a 4-year period, 2010-2014. Of the 7041 cases reviewed, no cases resulted in serious complications, including death, anaphylaxis, aspiration, cardiovascular adverse events, or neurologic adverse events. Of the 7041 cases reviewed, 196 (3.0%) resulted in a predischarge or postdischarge adverse event. The predischarge adverse event occurring with the highest frequency was laryngospasm, occurring in 35 cases (0.50%). The postdischarge adverse event occurring with the highest frequency was nausea, reported by 99 patients (5.0%). This study provides strong clinical outcomes data to support the safety of office-based anesthesia as performed by dentist anesthesiologists in the treatment of pediatric dental patients.

Korean Brain Rehabilitation Registry for Rehabilitation of Persons with Brain Disorders: Annual Report in 2009

PubMed Central

Yang, Seung Nam; Park, Si-Woon; Jung, Han Young; Rah, Ueon Woo; Kim, Yun-Hee; Chun, Min Ho; Paik, Nam-Jong; Yoo, Seung Don; Pyun, Sung-Bom; Kim, Min Wook; Lee, Sam-Gyu; Park, Byung Kyu; Shin, Heesuk; Shin, Yong Il; Lee, Heeyeon

2012-01-01

This first annual report provides a description of patients discharged from rehabilitation facilities in Korea based on secondary data analysis of Korean Brain Rehabilitation Registry V1.0 subscribed in 2009. The analysis included 1,697 records of patients with brain disorders including stroke, traumatic brain injury, brain tumor and other disorders from 24 rehabilitation facilities across Korea. The data comprised 1,380 cases of stroke, 104 cases of brain injury, 55 cases of brain tumor, and 58 cases of other brain diseases. The functional status of each patient was measured using the Korean version of the Modified Barthel Index (KMBI). The average change in the KMBI score was 15.9 for all patients in the inpatient rehabilitation facility. The average length of stay for inpatient rehabilitation was 36.9 days. The transfer rates to other hospitals were high, being 62.4% when all patients were considered. Patients with brain disorders of Korea in 2009 and measurable functional improvement was observed in patients. However, relatively high percentages of patients were not discharged to the community after inpatient rehabilitation. Based on the results of this study, consecutive reports of the status of rehabilitation need to be conducted in order to provide useful information to many practitioners. PMID:22690103

Sex and Geographic Differences in the Prevalence of Reported Childhood Motor Disability and Their Trends in Taiwan

PubMed Central

Tseng, Yen-Cheng

2018-01-01

Motor disability (MD) is not uncommon in children, but data at the national level are scarce. As the Taiwan government certifies and registers disabled residents for providing services on a routine basis, the registry provides a unique opportunity for studying MD. Using data from the registry, we calculated the prevalence of MD by age, sex, and geographic area and assessed the changes from 2004 to 2010. We excluded cases under 3 years old because the government discourages the certification at this age. We found that cases between 3 and 17 years old decreased from 8187 to 6022 per year from 2004 to 2010 and the prevalence generally decreased every year in all age groups. There were more boy cases than girl cases every year, and the prevalence rate ratios ranged from 1.26 to 1.39 (p < 0.05 in all years), with a decreasing trend over time (p < 0.01). Rural areas had higher prevalence in all the years, and the prevalence rate ratio decreased from 1.31 to 1.23 (p < 0.05 in all years), with a decreasing trend over time (p < 0.05). Further studies identifying the risk factors contributing to the decreases might help in the prevention of MD in the future. PMID:29850547

Big data in health care: using analytics to identify and manage high-risk and high-cost patients.

PubMed

Bates, David W; Saria, Suchi; Ohno-Machado, Lucila; Shah, Anand; Escobar, Gabriel

2014-07-01

The US health care system is rapidly adopting electronic health records, which will dramatically increase the quantity of clinical data that are available electronically. Simultaneously, rapid progress has been made in clinical analytics--techniques for analyzing large quantities of data and gleaning new insights from that analysis--which is part of what is known as big data. As a result, there are unprecedented opportunities to use big data to reduce the costs of health care in the United States. We present six use cases--that is, key examples--where some of the clearest opportunities exist to reduce costs through the use of big data: high-cost patients, readmissions, triage, decompensation (when a patient's condition worsens), adverse events, and treatment optimization for diseases affecting multiple organ systems. We discuss the types of insights that are likely to emerge from clinical analytics, the types of data needed to obtain such insights, and the infrastructure--analytics, algorithms, registries, assessment scores, monitoring devices, and so forth--that organizations will need to perform the necessary analyses and to implement changes that will improve care while reducing costs. Our findings have policy implications for regulatory oversight, ways to address privacy concerns, and the support of research on analytics. Project HOPE—The People-to-People Health Foundation, Inc.

French brain tumor database: 5-year histological results on 25 756 cases.

PubMed

Rigau, Valérie; Zouaoui, Sonia; Mathieu-Daudé, Hélène; Darlix, Amélie; Maran, Aurélie; Trétarre, Brigitte; Bessaoud, Faiza; Bauchet, Fabienne; Attaoua, Redha; Fabbro-Peray, Pascale; Fabbro, Michel; Kerr, Christine; Taillandier, Luc; Duffau, Hugues; Figarella-Branger, Dominique; Costes, Valérie; Bauchet, Luc

2011-11-01

This work aimed to prospectively record all primary central nervous system tumor (PCNST) cases in France, for which histological diagnosis is available. The objectives were to (i) create a national registry and a network to perform epidemiological studies; (ii) implement clinical and basic research protocols; and (iii) harmonize the health care of patients affected by PCNST. For 5 years, 25 756 cases of newly diagnosed and histologically confirmed PCNST have been recorded. Histological diagnoses included glioma (48.9%), all other neuroepithelial tumors (5%), meningioma (28.8%), nerve sheath tumors (8.4%), lymphoma (3.2%) and others (5.7%). Cryopreservation was reported for 6018 PCNST specimens. Tumor resections (R) were performed in 78% cases, while biopsies accounted for 22%. Median age (MA), sex, percentage R and number of cryopreserved tumors were detailed for each histology; for example, out of 6053 glioblastomas (MA 63 years, male 59.4%, R 62%, 1611 were cryopreserved), and out of 37 atypical teratoid/rhabdoid tumors (MA 2 years, male 56.8%, R 94%, 17 were cryopreserved). This database or databank dedicated to PCNST cases contains detailed data on clinical, histological and other characteristics, such as the inclusion of data on cryopreserved specimens that are not available in other European registries. Therefore, this is a valuable resource that can be used for planning future epidemiological and clinical research. © 2011 The Authors; Brain Pathology © 2011 International Society of Neuropathology.

78 FR 28124 - Registry for Attorneys and Representatives

Federal Register 2010, 2011, 2012, 2013, 2014

2013-05-14

... Appeals (BIA or Board). This notice provides additional instructions regarding the registration process... plan to create an electronic case access and filing system for the immigration courts and the Board... representative. This will increase efficiency by reducing system errors in scheduling matters and providing...

Ask a SEER Registrar - SEER Registrars

Cancer.gov

First submit questions to your central registry as required and they will submit them to SEER. Use the form on this page to submit questions to SEER staff about coding cancer cases or SEER's reporting guideline materials. Coding and abstracting answers are on SEER Inquiry System website.

The changing scene of allogeneic stem cell transplantation for chronic myeloid leukemia--a report from the German Registry covering the period from 1998 to 2004.

PubMed

Bacher, Ulrike; Klyuchnikov, Evgeny; Zabelina, Tatjana; Ottinger, Hellmut; Beelen, Dietrich W; Schrezenmeier, Hubert; Ehninger, Gerhard; Müller, Carlheinz; Berger, Jürgen; Suttorp, Meinolf; Kolb, Hans-Jochem; Kröger, Nicolaus; Zander, Axel R

2009-12-01

Due to the recent changes in the indication to allogeneic stem cell transplantation (SCT) in chronic myeloid leukemia (CML), we retrospectively analyzed 1,716 patients with different CML stages who received an allograft from related (n = 767) or unrelated donors (n = 938) within the German Registry of Stem Cell Transplantation (DRST) from 1998 to 2004. Myeloablative conditioning was performed in 724/871 cases (83%), dose-reduced conditioning in 147/871 (17%). Annual transplantations were decreasing from 357 to 98 (28%) in the period of study, but the proportion of advanced cases was increasing from 32% (112/346) to 53% (50/94) of all SCTs. Stage of disease, intervals from diagnosis, and patients' age were independent prognostic parameters, while peripheral stem cells and unrelated transplantation seemed equal to bone marrow/related transplantation. This study demonstrates that allo-SCT still has an important role in advanced CML, which emphasizes the need for optimized transplantation strategies for these high-risk patients.

Hereditary association between testicular cancer and familial ovarian cancer: A Familial Ovarian Cancer Registry study.

PubMed

Etter, John Lewis; Eng, Kevin; Cannioto, Rikki; Kaur, Jasmine; Almohanna, Hani; Alqassim, Emad; Szender, J Brian; Joseph, Janine M; Lele, Shashikant; Odunsi, Kunle; Moysich, Kirsten B

2018-04-01

Although family history of testicular cancer is well-established as a risk factor for testicular cancer, it is unknown whether family history of ovarian cancer is associated with risk of testicular cancer. Using data from the Familial Ovarian Cancer Registry on 2636 families with multiple cases of ovarian cancer, we systematically compared relative frequencies of ovarian cancer among relatives of men with testicular and non-testicular cancers. Thirty-one families with cases of both ovarian and testicular cancer were identified. We observed that, among men with cancer, those with testicular cancer were more likely to have a mother with ovarian cancer than those with non-testicular cancers (OR = 3.32, p = 0.004). Zero paternal grandmothers of men with testicular cancer had ovarian cancer. These observations provide compelling preliminary evidence for a familial association between ovarian and testicular cancers Future studies should be designed to further investigate this association and evaluate X-linkage. Copyright © 2018 Elsevier Ltd. All rights reserved.

Testicular cancer and occupational exposure to polyvinyl chloride plastics: a case-control study.

PubMed

Hardell, Lennart; Malmqvist, Nils; Ohlson, Carl-Göran; Westberg, Håkan; Eriksson, Mikael

2004-04-10

Exposure to polyvinyl chloride (PVC) plastics as a risk factor for testicular cancer was investigated. In total, 981 cases who were 20-75 years old and had reported to the Swedish Cancer Registry during 1993-1997 were included. One matched control from the population registry was used. Exposure was assessed by a questionnaire that was supplemented over the phone. Furthermore, an occupational hygienist qualified all exposures. In all, 791 matched pairs completed the questionnaire. Overall exposure to PVC plastics gave the odds ratio (OR)=1.35, 95% confidence interval (CI)=1.06-1.71, increasing with >10 year latency period to OR=1.45, 95% CI=1.06-1.98. No dose-response relationships were found but rather an inverse relationship with the highest odds ratios in the lowest exposure category. In conclusion, no clear association with testicular cancer and exposure to PVC could be found in our study in contrast to a previous observation. Copyright 2004 Wiley-Liss, Inc.

Clinical stages in patients with primary and subsequent cancers based on the czech cancer registry 1976-2005.

PubMed

Geryk, Edvard; Stampach, Radim; Dítě, Petr; Kozel, Jiří; Horváth, Teodor; Kubíček, Petr

2013-01-01

Of 1,486,984 new cancers registered in the Czech Cancer Registry in 1976-2005, 290,312 (19.5%) were multiple malignant neoplasms (MMNs), of which there were 65,292 primary and 89,796 subsequent cases in men and 59,970 primary and 75,254 subsequent cases in women. The duplicities were higher in women, and the triplicities and others (3-6 MMNs) were higher in men. The most frequent diagnoses were the primary cancers of skin, gastrointestinal and urinary tract, male genital organs, respiratory tract in men, and cancers of skin, breast, female genital organs, and gastrointestinal tract in women. The analysis of the early and advanced clinical stages shows that the number of subsequent advanced stages increased after primary advanced stages. Their time-age-space distributions visualized maps of MMNs in 14 Czech regions. These results support the improvement of algorithms of dispensary care for the early detection of the subsequent neoplasms.

2001 Annual Report of the Korea Central Cancer Registry: Based on Registered Data from 134 Hospitals

PubMed Central

Shin, Hai-Rim; Won, Young-Joo; Jung, Kyu-Won

2004-01-01

Purpose To estimate the number of cancer cases during 2001, in Korea, through a nationwide hospital based cancer registration by the Korea Central Cancer Registry (KCCR). Materials and Methods One hundred and thirty four hospitals participated in the KCCR program in 2001. Cancer cases were coded and classified according to the International Classification of Diseases for Oncology 2nd edition (ICD-O-2). The software program "IARC Check" was used to evaluate the quality of the registered cancer cases. Of the 111,816 malignancies registered, 10,106 (9.0%) duplicated malignancies were excluded. Among the remaining 95,542 malignancies, 3,598 (3.8%) cases with carcinoma in situ (Morphology code/2) were separated. Finally, 91,944 malignancies were analyzed. Results Of the total 91,944 malignancies, 51,753 (56.3%) cases were males and 40,191 (43.7%) were females. More than one third of cases were from the elderly (65 years old and more). The six leading primary cancer sites, in the order of their relative frequency, were stomach (24.1%), followed by the lung (16.0%), the liver (16.0%), the colorectum (10.5%), the bladder (3.4%), and the prostate (2.8%) among males. In females, the breast (16.1%) was the common cancer site, followed by the stomach (15.3%), the colorectum (10.5%), the cervix uteri (10.1%), the thyroid gland (8.3%) and the lung (6.6%). Conclusion With the continued increase in cancer cases, the total number of registered cancer cases in Korea continues to rapidly increase. PMID:20396562

[Respiratory disease registries in Spain: fundamentals and organization].

PubMed

Lara, Beatriz; Morales, Pilar; Blanco, Ignacio; Vendrell, Montserrat; de Gracia Roldán, Javier; Monreal, Manel; Orriols, Ramón; Isidro, Isabel; Abú-Shams, Khalil; Escribano, Pilar; Villena, Victoria; Rodrigo, Teresa; Vidal Plà, Rafael; García-Yuste, Mariano; Miravitlles, Marc

2011-08-01

This present paper describes the general characteristics, objectives and organizational aspects of the respiratory disease registries in Spain with the aim to report their activities and increase their diffusion. The document compiles information on the following registries: the Spanish Registry of Patients with Alpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of Thromboembolic Disease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish Multi-center Study of Neuroendocrine Pulmonary Tumors. Our paper provides information on each of the registries cited. Each registry has compiled specific clinical information providing data in real situations, and completes the results obtained from clinical assays. Said information has been published both in national as well as international publications and has lead to the creation of various guidelines. Therefore, the activities of the professionals involved in the registries have spread the knowledge about the diseases studied, promoting the exchange of information among workgroups. Copyright © 2010 SEPAR. Published by Elsevier Espana. All rights reserved.

The Danish Neuro-Oncology Registry: establishment, completeness and validity.

PubMed

Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J; Rasmussen, Birthe Krogh; Nørgård, Bente Mertz; Gradel, Kim Oren; Guldberg, Rikke

2016-08-30

The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completeness of patient registration and validity of data. The completeness of the number of patients registered in the database was evaluated in the study period from January 2009 through December 2014 by comparing cases reported to the DNOR with the Danish National Patient Registry and the Danish Pathology Registry. The data validity of important clinical variables was evaluated by a random sample of 100 patients from the DNOR using the medical records as reference. A total of 2241 patients were registered in the DNOR by December 2014 with an overall patient completeness of 92 %, which increased during the study period (from 78 % in 2009 to 96 % in 2014). Medical records were available for all patients in the validity analyses. Most variables showed a high agreement proportion (56-100 %), with a fair to good chance-corrected agreement (k = 0.43-1.0). The completeness of patient registration was very high (92 %) and the validity of the most important patient data was good. The DNOR is a newly established national database, which is a reliable source for future scientific studies and clinical quality assessments among patients with gliomas.

Recombinant Activated Factor VII (Eptacog Alfa Activated, NovoSeven®) in Patients with Rare Congenital Bleeding Disorders. A Systematic Review on its Use in Surgical Procedures.

PubMed

Di Minno, Matteo Nicola Dario; Ambrosino, Pasquale; Myasoedova, Veronika; Amato, Manuela; Ventre, Itala; Tremoli, Elena; Minno, Alessandro Di

2017-01-01

In the absence of definite guidelines in the area, we have carried a systemic review to provide a thorough overview concerning the efficacy and safety of recombinant activated factor VII (rFVIIa, NovoSeven®, Novo Nordisk A/S, Bagsværd, Denmark) in patients with Glanzmann's thrombasthenia (GT) and FVII deficiency, undergoing surgical procedures. PubMed, Web of Science, Scopus and EMBASE databases was employed for the search. Three multicenter registries were identified: the Glanzmann's Thrombasthenia Registry (GTR), the Seven Treatment Evaluation Registry (STER), and a German post-marketing surveillance registry (the WIRK study). In addition, data from 10 case-series and/or single-center experiences have been summarized. We have found that the following; perioperatively, the hemostatic effectiveness of rFVIIa was high in GT patients and in those with FVII deficiency undergoing both minor and major surgical procedures. Moreover, in all studies, rFVIIa was well tolerated. Thus, the current evidence shows an optimal perioperative safety/efficacy profile of rFVIIa in the setting of these rare bleeding disorders, and provides the rationale for further studies aimed at evaluating the optimal perioperative anti-hemorrhagic prophylaxis with rFVIIa in GT and in FVII deficient patients. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.

Anatomical Features and Early Outcomes of Endovascular Repair of Abdominal Aortic Aneurysm from a Korean Multicenter Registry.

PubMed

Kwon, Hyunwook; Lee, Do Yun; Choi, Soo Jin Na; Park, Ki Hyuk; Min, Seung-Kee; Chang, Jeong-Hwan; Huh, Seung; Jeon, Yong Sun; Won, Jehwan; Byun, Seung Jae; Park, Sang Jun; Jang, Lee Chan; Kwon, Tae-Won

2015-09-01

To introduce a nation-based endovascular aneurysm repair (EVAR) registry in South Korea and to analyze the anatomical features and early clinical outcomes of abdominal aortic aneurysms (AAA) in patients who underwent EVAR. The Korean EVAR registry (KER) was a template-based online registry developed and established in 2009. The KER recruited 389 patients who underwent EVAR from 13 medical centers in South Korea from January 2010 to June 2010. We retrospectively reviewed the anatomic features and 30-day clinical outcomes. Initial deployment without open conversion was achieved in all cases and procedure-related 30-day mortality rate was 1.9%. Anatomic features showed the following variables: proximal aortic neck angle 48.8±25.7° (mean±standard deviation), vertical neck length 35.0±17.2 mm, aneurysmal sac diameter 57.2±14.2 mm, common iliac artery (CIA) involvement in 218 (56.3%) patients, and median right CIA length 34.9 mm. Two hundred and nineteen (56.3%) patients showed neck calcification, 98 patients (25.2%) had neck thrombus, and the inferior mesenteric arteries of 91 patients (23.4%) were occluded. Anatomical features of AAA in patients from the KER were characterized as having angulated proximal neck, tortuous iliac artery, and a higher rate of CIA involvement. Long-term follow-up and ongoing studies are required.

Using a cardiac arrest registry to measure the quality of emergency medical service care: decade of findings from the Victorian Ambulance Cardiac Arrest Registry.

PubMed

Nehme, Ziad; Bernard, Stephen; Cameron, Peter; Bray, Janet E; Meredith, Ian T; Lijovic, Marijana; Smith, Karen

2015-01-01

Although the value of clinical registries has been well recognized in developed countries, their use for measuring the quality of emergency medical service care remains relatively unknown. We report the methodology and findings of a statewide emergency medical service surveillance initiative, which is used to measure the quality of systems of care for patients with out-of-hospital cardiac arrest. Between July 1, 2002, and June 30, 2012, data for adult out-of-hospital cardiac arrest cases of presumed cardiac cause occurring in the Australian Southeastern state of Victoria were extracted from the Victorian Ambulance Cardiac Arrest Registry. Regional and temporal trends in bystander cardiopulmonary resuscitation, event survival, and survival to hospital discharge were analyzed using logistic regression and multilevel modeling. A total of 32,097 out-of-hospital cardiac arrest cases were identified, of whom 14,083 (43.9%) received treatment by the emergency medical service. The risk-adjusted odds of receiving bystander cardiopulmonary resuscitation (odds ratio [OR], 2.96; 95% confidence interval, 2.62-3.33), event survival (OR, 1.55; 95% confidence interval, 1.30-1.85), and survival to hospital discharge (OR, 2.81; 95% confidence interval, 2.07-3.82) were significantly improved by 2011 to 2012 compared with baseline. Significant variation in rates of bystander cardiopulmonary resuscitation and survival were observed across regions, with arrests in rural regions less likely to survive to hospital discharge. The median OR for interhospital variability in survival to hospital discharge outcome was 70% (median OR, 1.70). Between 2002 and 2012, there have been significant improvements in bystander cardiopulmonary resuscitation and survival outcome for out-of-hospital cardiac arrest patients in Victoria, Australia. However, regional survival disparities and interhospital variability in outcomes pose significant challenges for future improvements in care. © 2015 American Heart Association, Inc.

Cancer incidence in Rabat, Morocco: 2006–2008

PubMed Central

Tazi, Mohammed Adnane; Er-Raki, Abdelouahed; Benjaafar, Noureddine

2013-01-01

Introduction No population-based data of cancer incidence from Morocco have been published before. This is the first report of cancer incidence in Rabat from a population-based cancer registry for the period 2006–2008. Materials and methods The cancer registry collects data on all new cases of cancer diagnosed in the resident population of the Rabat area. Data collection is an active process involving visits by registry staff to all data sources, essentially hospitals, pathological laboratories, and private clinics in Rabat. Results A total of 2,473 new cases of cancer were registered among residents in Rabat during the period 2006–2008. The overall world age-standardised rate (ASR) for all sites combined was 136.6/100,000 for men and 114.5/100,000 for women. The most frequently diagnosed malignancies in males were lung cancer (19.0%, ASR 24.8/105), followed by prostate cancer (15.5%, ASR 22.9/105), colorectal cancer (8.8%, ASR 12.0/105), bladder cancer (6.9%, ASR 9.7/105), and non-Hodgkin’s lymphoma (NHL) (6.0%, ASR 8.2/105). In females, the most frequently reported malignancies were breast cancer (39.9%, ASR 43.4/105), followed by cervix uteri cancer (11.4%, ASR 13.0/105), colorectal cancer (7.5%, ASR 9.0/105), NHL (3.4, ASR 4.2/105), and thyroid cancer (3.4%, ASR 3.9/105). Of all cancers, 2% are observed in childhood (0–14 years), and ~43% of them are malignant haemopathies. Conclusion The data reported by Rabat Cancer Registry indicate that cancers of the breast, cervix, uteri, and colon and rectum in females and the lung, prostate, and colon and rectum in men are major cancers in the population of Rabat. The Incidences observed are sometimes different from those observed in the neighbouring North African countries. PMID:23940493

Prevalence of risk factors for acquiring measles during the 2011 outbreak in Quebec and impact of the province-wide school-based vaccination campaign on population immunity.

PubMed

Billard, Marie-Noëlle; De Serres, Gaston; Gariépy, Marie-Claude; Boulianne, Nicole; Toth, Eveline; Landry, Monique; Skowronski, Danuta M

2017-01-01

A large measles outbreak occurred in Quebec, Canada, in 2011. Although nearly two-thirds of the cases occurred in only two health districts, a mass vaccination campaign targeting all Quebec elementary and high school students without valid two-dose history was undertaken to prevent future outbreaks. We compared rates of non-vaccination and age at first measles vaccine dose among students in the two most-affected districts and the rest of the province and estimated the improvement in overall student measles immunity due to the mass school-based vaccination campaign. Data were extracted from the provincial vaccination registry for students in kindergarten to grade 11 during the 2011/2012 school year. A telephone survey was conducted in three sub-groups: students whose first measles vaccine dose recorded in the vaccination registry was received during the 2011 school vaccination campaign; students with no dose recorded in the registry whose parents refused receipt during the school campaign; and students with no dose recorded in the registry and no information about parental consent/refusal during the school campaign. Neither the prevalence of being non-vaccinated nor a younger age at first pediatric dose were higher in the two most-affected districts versus the rest of the province. The school campaign vaccinated nearly 8% of all students including 7% who previously received at least one dose. Before the outbreak, 3% of students were not vaccinated and one-third of these (1%/3%) were vaccinated during the campaign. The campaign likely increased the absolute school population immunity by just 1.7%. The concentration of measles cases in the two most-affected health districts during the large Quebec outbreak is not explained by more students who were unvaccinated or who had received their first vaccine dose at a younger age. The vaccination campaign reached one-third of unvaccinated students and only marginally improved population immunity.

A registry for exposure and population health in the Altai region affected by fallout from the Semipalatinsk nuclear test site.

PubMed

Shoikhet, Y N; Kiselev, V I; Zaitsev, E V; Kolyado, I B; Konovalov, B Y; Bauer, S; Grosche, B; Burkart, W

1999-09-01

A registry of the rural population in the Altai region exposed to fallout from nuclear tests at the Semipalatinsk test site (STS) was established more than four decades after the first Soviet nuclear explosion on August 29, 1949. Information about individuals living in an exposed and a control area was collected using all available local sources, such as kolkhoz documentation, school registries, medical treatment records and interviews with residents. As a result, a database comprising an exposed group of 39 179 individuals from 53 Altai region villages, 6769 external and 3303 internal controls was compiled. For several settlements, effective dose estimates reached the level of 1.5 Sv, while the average effective dose estimate in the exposed group was 340 mSv. Dosimetric data, vital status information and health records gathered at rayon and village medical facilities are held in the registry. Cause-of-death information for deceased residents is obtained from death registration forms archived at the Altai region vital statistics office. At present, a follow-up of approximately 40% of the population exposed in 1949 has been done. More will be added by searching for migrants to the larger towns of the Altai region, i.e. Barnaul, Rubtsovsk and Biisk. In order to assess the influence of radiation exposure, analytical studies with a case-control design for stomach and lung cancer are currently being prepared. The number of known cases is sufficient to detect an odds ratio of 1.5 at the 95% confidence level. Epidemiological studies in populations affected by fallout from STS may be equally important to the atomic bomb survivors' study for the direct quantification of radiation effects. The range of exposure rates experienced will extend the acute high-dose-rate findings from Hiroshima/Nagasaki towards acute and protracted lower exposures, which are more relevant for radiation protection issues.

Validation of Stroke Diagnosis in the National Registry of Hospitalized Patients in the Czech Republic.

PubMed

Sedova, Petra; Brown, Robert D; Zvolsky, Miroslav; Kadlecova, Pavla; Bryndziar, Tomas; Volny, Ondrej; Weiss, Viktor; Bednarik, Josef; Mikulik, Robert

2015-09-01

Stroke is a common cause of mortality and morbidity in Eastern Europe. However, detailed epidemiological data are not available. The National Registry of Hospitalized Patients (NRHOSP) is a nationwide registry of prospectively collected data regarding each hospitalization in the Czech Republic since 1998. As a first step in the evaluation of stroke epidemiology in the Czech Republic, we validated stroke cases in NRHOSP. Any hospital in the Czech Republic with a sufficient number of cases was included. We randomly selected 10 of all 72 hospitals and then 50 patients from each hospital in 2011 stratified according to stroke diagnosis (International Classification of Diseases Tenth Revision [ICD-10] cerebrovascular codes I60, I61, I63, I64, and G45). Discharge summaries from hospitalization were reviewed independently by 2 reviewers and compared with NRHOSP for accuracy of discharge diagnosis. Any disagreements were adjudicated by a third reviewer. Of 500 requested discharge summaries, 484 (97%) were available. Validators confirmed diagnosis in NRHOSP as follows: transient ischemic attack (TIA) or any stroke type in 82% (95% confidence interval [CI], 79-86), any stroke type in 85% (95% CI, 81-88), I63/cerebral infarction in 82% (95% CI, 74-89), I60/subarachnoid hemorrhage in 91% (95% CI, 85-97), I61/intracerebral hemorrhage in 91% (95% CI, 85-96), and G45/TIA in 49% (95% CI, 39-58). The most important reason for disagreement was use of I64/stroke, not specified for patients with I63. The accuracy of coding of the stroke ICD-10 codes for subarachnoid hemorrhage (I60) and intracerebral hemorrhage (I61) included in a Czech Republic national registry was high. The accuracy of coding for I63/cerebral infarction was somewhat lower than for ICH and SAH. Copyright © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved.

Unicompartmental knee arthroplasty modes of failure: wear is not the main reason for failure: a multicentre study of 418 failed knees.

PubMed

Epinette, J-A; Brunschweiler, B; Mertl, P; Mole, D; Cazenave, A

2012-10-01

This study originated from a symposium held by the French Hip and Knee Society (Société française de la hanche et du genou [SFHG]) and was carried out to better assess the distribution of causes of unicompartmental knee arthroplasty (UKA) failures, as well as cause-specific delay to onset. Our working hypothesis was that most failures were traceable to wear occurring over a period of many years. A multicentre retrospective study (25 centres) was conducted in 418 failed UKAs performed between 1978 and 2009. We determined the prevalence and time to onset of the main reasons for revision surgery based upon available preoperative findings. Additional intraoperative findings were analysed. The results were compared to those of nation wide registries to evaluate the representativeness of our study population. Times to revision surgery were short: 19% of revisions occurred within the first year and 48.5% within the first 5 years. Loosening was the main reason for failure (45%), followed by osteoarthritis progression (15%) and, finally, by wear (12%). Other reasons were technical problems in 11.5% of cases, unexplained pain in 5.5%, and failure of the supporting bone in 3.6%. The infection rate was 1.9%. Our results were consistent with those of Swedish and Australian registries. Our hypothesis was not confirmed. The short time to failure in most cases suggests a major role for surgical technique issues. Morbidity related to the implant per se may be seen as moderate and not greater than with total knee prostheses. The good agreement between our data and those of nationwide registries indicates that our population was representative. A finer analysis is needed, indicating that the establishment of a French registry would be of interest. Copyright © 2012. Published by Elsevier Masson SAS.

Two Suspected Worksite or Occupational Cancer Clusters Investigated Using the Cancer Data Registry and Multiple Primary Standardized Incidence Ratios in SEER *Stat-Idaho, 2013-2014.

PubMed

Rosenthal, Mariana; Johnson, Christopher J; Scoppa, Steve; Carter, Kris

2016-01-01

Investigations of suspected cancer clusters are resource intensive and rarely identify true clusters: among 428 publicly reported US investigations during 1990-2011, only 1 etiologic cluster was identified. In 2013, the Cancer Data Registry of Idaho (CDRI) was contacted regarding a suspected cancer cluster at a worksite (Cluster A) and among an occupational cohort (Cluster B). We investigated to determine whether these were true clusters. We derived investigation cohorts for Cluster A from facility-provided employee records and for Cluster B from professional licensing records. We used Registry PlusTM Link Plus to conduct probabilistic linkage of cohort members to the CDRI registry and completed matching through manual review by using LexisNexis®, Accurint®, and the Social Security Death Index. We calculated standardized incidence ratios (SIR) using the MP-SIR session type in SEER*Stat and Idaho and US referent populations. For Cluster A, we identified 34 cancer cases during 9,689 person-years; compared with Idaho and US rates, 95 percent CIs for SIRs included 1.0 for 24 of 24 primary site categories. For Cluster B, we identified 78 cancer cases during 15,154 person-years; compared with Idaho rates, 95 percent CI for SIRs included 1.0 for 23 of 24 primary site categories and was less than 1.0 for lung and bronchus cancers, and compared with US rates, 95 percent CI for SIRs included 1.0 for 22 of 24 primary site categories and was less than 1.0 for lung and bronchus and colorectal cancers. We identified no statistically significant excess in cancer incidence in either cohort. SEER*Stat's MP-SIR is an efficient tool for performing SIR assessments, a Centers for Disease Control and Prevention/Council of State and Territorial Epidemiologists-recommended step when investigating suspected cancer clusters.

Central nervous system tumours among adolescents and young adults (15-39 years) in Southern and Eastern Europe: Registration improvements reveal higher incidence rates compared to the US.

PubMed

Georgakis, Marios K; Panagopoulou, Paraskevi; Papathoma, Paraskevi; Tragiannidis, Athanasios; Ryzhov, Anton; Zivkovic-Perisic, Snezana; Eser, Sultan; Taraszkiewicz, Łukasz; Sekerija, Mario; Žagar, Tina; Antunes, Luis; Zborovskaya, Anna; Bastos, Joana; Florea, Margareta; Coza, Daniela; Demetriou, Anna; Agius, Domenic; Strahinja, Rajko M; Sfakianos, Georgios; Nikas, Ioannis; Kosmidis, Sofia; Razis, Evangelia; Pourtsidis, Apostolos; Kantzanou, Maria; Dessypris, Nick; Petridou, Eleni Th

2017-11-01

To present incidence of central nervous system (CNS) tumours among adolescents and young adults (AYAs; 15-39 years) derived from registries of Southern and Eastern Europe (SEE) in comparison to the Surveillance, Epidemiology and End Results (SEER), US and explore changes due to etiological parameters or registration improvement via evaluating time trends. Diagnoses of 11,438 incident malignant CNS tumours in AYAs (1990-2014) were retrieved from 14 collaborating SEE cancer registries and 13,573 from the publicly available SEER database (1990-2012). Age-adjusted incidence rates (AIRs) were calculated; Poisson and joinpoint regression analyses were performed for temporal trends. The overall AIR of malignant CNS tumours among AYAs was higher in SEE (28.1/million) compared to SEER (24.7/million). Astrocytomas comprised almost half of the cases in both regions, albeit the higher proportion of unspecified cases in SEE registries (30% versus 2.5% in SEER). Similar were the age and gender distributions across SEE and SEER with a male-to-female ratio of 1.3 and an overall increase of incidence by age. Increasing temporal trends in incidence were documented in four SEE registries (Greater Poland, Portugal North, Turkey-Izmir and Ukraine) versus an annual decrease in Croatia (-2.5%) and a rather stable rate in SEER (-0.3%). This first report on descriptive epidemiology of AYAs malignant CNS tumours in the SEE area shows higher incidence rates as compared to the United States of America and variable temporal trends that may be linked to registration improvements. Hence, it emphasises the need for optimisation of cancer registration processes, as to enable the in-depth evaluation of the observed patterns by disease subtype. Copyright © 2017 Elsevier Ltd. All rights reserved.

Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases.

PubMed

Santos, Maria José; Canhão, Helena; Mourão, Ana Filipa; Oliveira Ramos, Filipa; Ponte, Cristina; Duarte, Cátia; Barcelos, Anabela; Martins, Fernando; Melo Gomes, José António

2017-01-01

Patient registries are key instruments aimed at a better understanding of the natural history of diseases, at assessing the effectiveness of therapeutic interventions, as well as identifying rare events or outcomes that are not captured in clinical trials. However, the potential of registries goes far beyond these aspects. For example, registries promote the standardization of clinical practice, can also provide information on domains that are not routinely collected in clinical practice and can support decision-making. Being aware of the importance of registries, the Portuguese Society of Rheumatology developed the Rheumatic Diseases Portuguese Register- Reuma.pt - which proved to be an innovative instrument essential to a better understanding of systemic immune-mediated rheumatic diseases. To describe the contribution of Reuma.pt to the knowledge of systemic immune-mediated rheumatic diseases. Reuma.pt is widely implemented, with 77 centres actively contributing to the recruitment and follow-up of patients. Reuma.pt follows in a standardized way patients with the following systemic inflammatory rheumatic diseases: rheumatoid arthritis (n=6218), psoriatic arthritis (n=1498), spondyloarthritis (n=2529), juvenile idiopathic arthritis (n =1561), autoinflammatory syndromes (n=122), systemic lupus erythematosus (n =1718), systemic sclerosis (n=180) and vasculitis (n=221). This platform is intended for use as an electronic medical record, provides standardized assessment of patients and support to the clinical decision, thereby contributing to a better quality of care of rheumatic patients. The research based on Reuma.pt identified genetic determinants of susceptibility and response to therapy, characterized in detail systemic rheumatic diseases and their long-term impact, critically appraised the performance of instruments for monitoring the disease activity, established the effectiveness and safety of biologic therapies and identified predictors of response, and proactively engaged patients in the management of their disease. Reuma.pt is an innovative tool, widely established in the country that contributes to a clinical practice of excellence and simultaneously to increase the knowledge of systemic immune-mediated rheumatic diseases. Additionally, Reuma.pt fosters patients' participation in the management of the disease.

Bone marrow failure in childhood: central pathology review of a nationwide registry.

PubMed

Ito, Masafumi

2017-01-01

Refractory cytopenia of childhood (RCC) was proposed as a provisional entity in the 2008 WHO classification of myelodysplastic syndromes (MDS). It is defined as a childhood MDS featuring persistent cytopenia without increase blasts in bone marrow (BM) or peripheral blood (PB). Because the majority of RCC cases feature hypocellularity and pancytopenia, it is quite challenging to differentiate RCC from acquired aplastic anemia (AA) and many kinds of inherited bone marrow failure syndromes (IBMFS). Diagnosis of RCC requires BM histology of characteristic features such as isolated erythroid islet with left shift, abnormal localization and micromegakaryocytes. The Japanese Society of Pediatric Hematology/Oncology has opened the central registry review system since 2009 to evaluate childhood cases of bone marrow failure (BMF). It has reviewed cytology and BM pathology of all registered BMF cases, which number more than 1,700. In the evaluation of BMF, BM pathology is important to assess the mechanism of hematopoiesis. Pathological dysplasia should be differentiated from cytological dysplasia. A central review system is important for rare diseases, such as pediatric BMF. Standardization of pathological diagnosis should be established upon consensus findings, descriptions, and diagnostic approaches. In this review, the pathology of pediatric BMF syndromes is summarized.

Keratoconus presenting with bilateral simultaneous acute corneal hydrops.

PubMed

Bilgin, Burak; Unal, Betül; Unal, Mustafa; Doğan, Erkan; Cetinkaya, Aslı; Akyol, Mahmut; Yücel, Iclal; Akar, Yusuf; Apaydın, Cemil; Ilhan, Deniz

2013-04-01

To report a case of unknown keratoconus presenting with bilateral simultaneous acute corneal hydrops. Case report. A case of a 12-year-old male patient with Leber congenital amaurosis (LCA) presented with sudden whitening and lacrimation for 2 days in both eyes simultaneously. At the initial examination, there were bilateral acute corneal hydrops, enophthalmic eyes and roving nystagmus. Ultrasonography revealed clear crystalline lenses and attached retina. Initial management consisted of topical hypertonic solutions, steroids and artificial tears. Bilateral simultaneous acute corneal hydrops has not been reported before in the literature. It may be the presenting sign of keratoconus. Copyright © 2012 British Contact Lens Association. Published by Elsevier Ltd. All rights reserved.

Breast cancer characteristics and survival differences between Maori, Pacific and other New Zealand women included in the Quality Audit program of Breast Surgeons of Australia and New Zealand.

PubMed

Campbell, Ian; Scott, Nina; Seneviratne, Sanjeewa; Kollias, James; Walters, David; Taylor, Corey; Roder, David

2015-01-01

The Quality Audit (BQA) program of the Breast Surgeons of Australia and New Zealand (NZ) collects data on early female breast cancer and its treatment. BQA data covered approximately half all early breast cancers diagnosed in NZ during roll-out of the BQA program in 1998-2010. Coverage increased progressively to about 80% by 2008. This is the biggest NZ breast cancer database outside the NZ Cancer Registry and it includes cancer and clinical management data not collected by the Registry. We used these BQA data to compare socio-demographic and cancer characteristics and survivals by ethnicity. BQA data for 1998-2010 diagnoses were linked to NZ death records using the National Health Index (NHI) for linking. Live cases were followed up to December 31st 2010. Socio-demographic and invasive cancer characteristics and disease-specific survivals were compared by ethnicity. Five-year survivals were 87% for Maori, 84% for Pacific, 91% for other NZ cases and 90% overall. This compared with the 86% survival reported for all female breast cases covered by the NZ Cancer Registry which also included more advanced stages. Patterns of survival by clinical risk factors accorded with patterns expected from the scientific literature. Compared with Other cases, Maori and Pacific women were younger, came from more deprived areas, and had larger cancers with more ductal and fewer lobular histology types. Their cancers were also less likely to have a triple negative phenotype. More of the Pacific women had vascular invasion. Maori women were more likely to reside in areas more remote from regional cancer centres, whereas Pacific women generally lived closer to these centres than Other NZ cases. NZ BQA data indicate previously unreported differences in breast cancer biology by ethnicity. Maori and Pacific women had reduced breast cancer survival compared with Other NZ women, after adjusting for socio-demographic and cancer characteristics. The potential contributions to survival differences of variations in service access, timeliness and quality of care, need to be examined, along with effects of co- morbidity and biological factors.

Characteristics and prognosis of sudden cardiac death in Greater Paris: population-based approach from the Paris Sudden Death Expertise Center (Paris-SDEC).

PubMed

Bougouin, Wulfran; Lamhaut, Lionel; Marijon, Eloi; Jost, Daniel; Dumas, Florence; Deye, Nicolas; Beganton, Frankie; Empana, Jean-Philippe; Chazelle, Emilie; Cariou, Alain; Jouven, Xavier

2014-06-01

Sudden cardiac death (SCD) is a major public health concern, but data regarding epidemiology of this disease in Western European countries are outdated. This study reports the first results from a large registry of SCD. A population-based registry was established in May 2011 using multiple sources to collect every case of SCD in Paris and its suburbs, covering a population of 6.6 million. Utstein variables were recorded. Pre-hospital and in-hospital data were considered, and the main outcome was survival at hospital discharge. Neurologic status at discharge was established as well. Of the 6,165 cases of SCD recorded over 2 years, 3,816 had a resuscitation attempt and represent the study population. Most patients were male (69%), the SCD occurred at home (72%) with bystanders in 80% of cases, and cardiopulmonary resuscitation (CPR) was performed in 45% of cases. Initial rhythm was shockable in 26% of cases. A total of 1,332 patients (35%) were admitted alive to hospital. Among hospitalized patients, 58% had a coronary angiogram, and the same proportion had therapeutic hypothermia. Finally, 279 patients (7.5%) were discharged alive, of whom 96% had a favorable neurological outcome. In multivariate analysis, bystander CPR (OR 2.1, 95% CI 1.5-3.1) and initial shockable rhythm (OR 11.5, 95% CI 7.6-17.3) were positively associated with survival at hospital discharge, whereas age (OR 0.97 per year, 95% CI 0.96-0.98), longer response time (OR 0.93 per minute, 95% CI 0.89-0.97), occurrence at home (OR 0.4, 95% CI 0.3-0.6), and epinephrine dose greater than 3 mg (OR 0.05, 95% CI 0.03-0.08) were inversely associated with survival. Despite being conducted in the therapeutic hypothermia and early coronary angiogram era, hospital discharge survival rate of resuscitated SCD remains poor. The current registry suggests ways to improve pre-hospital and in-hospital care of these patients.

Initial Report of the Korean Organ Transplant Registry (KOTRY): Heart Transplantation.

PubMed

Lee, Hae Young; Jeon, Eun Seok; Kang, Seok Min; Kim, Jae Joong

2017-11-01

The Korean Organ Transplant Registry (KOTRY), which was the first national transplant registry in Korea, was founded by the Korean Society for Transplantation and the Korean Center for Disease Control in 2014. Here, we present the initial report of the Korean Heart Transplant Registry. A total of 183 heart transplantation (HTPL) patients performed at 4 nationally representative hospitals were collected from April 2014 to December 2015. We analyzed donor and recipient characteristics, treatment patterns, and immediate post-transplantation outcomes. One hundred and eighty-three patients were enrolled. The mean age of the patients was 50.5±13.5 years. The mean age of the male recipients was 4 years greater than that of the female recipients (51.7±13.3 years vs. 47.9±13.7 years, p<0.050). The mean age of donors was more than 12 years younger than that of heart recipients (37.6±10.1 years). Dilated cardiomyopathy was the predominant cause (69%) of heart failure in recipients, followed by ischemic heart diseases (14%) and valvular heart disease (4%). Rejection episodes were most frequent in the 1-6-month period after transplantation (48%), and rarely required intensive treatment. Infection episodes were most frequent <1 month after transplantation (66%) and bacterial and viral infections were equally reported. The 1-year survival rate was 91.6% and most mortality cases occurred during the perioperative period within 1 month after transplantation. With the establishment of the KOTRY in 2014, it is now possible to present nationwide epidemiological data for HTPL in Korea for the first time. The KOTRY is the first national HTPL registry in Korea, and will continue until 2023. Copyright © 2017. The Korean Society of Cardiology

Vaccination coverage among children under two years of age based on electronic immunization registry in Southern Brazil.

PubMed

Luhm, Karin Regina; Cardoso, Maria Regina Alves; Waldman, Eliseu Alves

2011-02-01

To evaluate the immunization program for 12 and 24-month-old children based on electronic immunization registry. A descriptive study of a random sample of 2,637 children born in 2002 living in the city of Curitiba, Southern Brazil was performed. Data was collected from local electronic immunization registers and the National Live Birth Information System, as well as from a household survey for cases with incomplete records. Coverage at 12 and 24 months was estimated and analyzed according to the socioeconomic characteristics of each administrative district and the child's enrollment status in the health care service. The coverage, completeness, and record duplication in the registry were analyzed. Coverage of immunization was 95.3% at 12 months, with no disparities among administrative districts, and 90.3% at 24 months, with higher coverage in a district with lower socioeconomic conditions (p < 0.01). The proportion of vaccines, according to type, given before and after the recommended age reached 0.9% and 32.2%, respectively. In the surveyed sample, electronic immunization registry coverage was 98%, underreporting of vaccine doses was 11%, and record duplication was 20.6%. Groups with highest coverage included children with permanent records, children with three or more appointments through the National Unified Health Care System, and children seen within Primary Health Care Facilities fully adopting the Family Health Strategy. Vaccination coverage in Curitiba was high and homogeneous among districts, and health service enrollment status was an important factor in these results. The electronic immunization registry was a useful tool for monitoring vaccine coverage; however, it will be important to determine cost-effectiveness prior to wide-scale adoption by the National Immunization Program.

The Burns Registry of Australia and New Zealand: progressing the evidence base for burn care.

PubMed

Cleland, Heather; Greenwood, John E; Wood, Fiona M; Read, David J; Wong She, Richard; Maitz, Peter; Castley, Andrew; Vandervord, John G; Simcock, Jeremy; Adams, Christopher D; Gabbe, Belinda J

2016-03-21

Analysis of data from the Burns Registry of Australia and New Zealand (BRANZ) to determine the extent of variation between participating units in treatment and in specific outcomes during the first 4 years of its operation. BRANZ, an initiative of the Australian and New Zealand Burn Association, is a clinical quality registry developed in accordance with the Australian Commission on Safety and Quality in Healthcare national operating principles. Patients with burn injury who fulfil pre-defined criteria are transferred to and managed in designated burn units. There are 17 adult and paediatric units in Australia and New Zealand that manage almost all patients with significant burn injury. Twelve of these units treat adult patients. Data on 7184 adult cases were contributed by ten acute adult burn units to the registry between July 2010 and June 2014.Major outcomes: In-hospital mortality, hospital length of stay, skin grafting rates, and rates of admission to intensive care units. Considerable variations in unit profiles (including numbers of patients treated), in treatment and in outcomes were identified. Despite the highly centralised delivery of care to patients with severe or complex burn injury, and the relatively small number of specialist burn units, we found significant variation between units in clinical management and in outcomes. BRANZ data from its first 4 years of operation support its feasibility and the value of further development of the registry. Based on these results, the focus of ongoing research is to improve understanding of the reasons for variations in practice and of their effect on outcomes for patients, and to develop evidence-informed clinical guidelines for burn management in Australia and New Zealand.

End stage renal disease in Brunei Darussalam - report from the first Brunei Dialysis Transplant Registry (BDTR).

PubMed

Tan, Jackson

2013-09-01

The Brunei Dialysis and Transplant Registry (BDTR) was established in 2011 to collect data from patients undergoing renal replacement therapy (RRT) in Brunei Darussalam. The chief aims of the registry are to obtain general demographic data for RRT patients and to determine disease burden attributable to End Stage Renal Disease (ESRD). The registry population comprises of all ESRD patients treated in Brunei Darussalam. Data domains include general demographic data, medical history, ESRD etiological causes, laboratory investigations, dialysis treatment and outcomes. There were 545 prevalent RRT patients in Brunei at the end of 2011. The incidence and prevalence of ESRD were 265 and 1250 per million population. Hemodialysis (HD), Peritoneal Dialysis (PD) and Transplant comprised of 83%, 11% and 6% of the RRT population, respectively. Diabetes mellitus accounted for 57% of all new incident cases. The mean serum hemoglobin, phosphate, calcium and iPTH were 11.0 ± 1.6 g/dL, 1.9 ± 0.5 mmol/L, 2.3 ± 0.2 mmol/L and 202.5 ± 323.4 ng/mL. Dialysis adequacy for HD and PD were 65.1 (urea reduction ratio) and 2.0 ± 0.3 (Kt/v). 71 % of all prevalent HD had functioning AV fistulae and the peritonitis incidence was one in 24.5 patient-month/episode. The first BDTR has identified some deficiencies in the renal services in Brunei. However, it signals an important milestone for the establishment of benchmarked renal practice in the country. We hoped to maintain and improve our registry for years to come and will strive to align our standards to acceptable international practice.

Prospective data collection of a new procedure by a specialty society: the FIBROID registry.

PubMed

Myers, Evan R; Goodwin, Scott; Landow, Wendy; Mauro, Matthew; Peterson, Eric; Pron, Gaylene; Spies, James B; Worthington-Kirsch, Robert

2005-07-01

To describe registry methods and baseline patient demographics from a national sample of women undergoing uterine artery embolization for uterine leiomyomata. Interventional radiology practices were recruited to submit data by a secure Web site on women undergoing uterine artery embolization for symptomatic leiomyomata. Baseline data included patient demographics, prior medical, surgical, and obstetrical history, uterine anatomy, and quality-of-life measures. Subsequent data collected included details of the uterine artery embolization procedure and hospital stay and outcomes at 30 days; patients were also offered the opportunity to participate in longer-term follow-up. Characteristics of white and African-American women were compared using t tests, chi(2), or Wilcoxon rank-sum tests as appropriate. As of December 31, 2002, 3,319 uterine artery embolization cases had been entered into the registry by 72 sites; number of patients entered by individual sites ranged from 1 to 514. Of these patients, 95.4% consented to participation in the short-term outcomes registry. Forty-eight percent of patients were African American, and 44.4% were white and non-Hispanic. Heavy menstrual bleeding was the single most bothersome symptom in 64.3% of patients. Compared with white non-Hispanic women, African-American women were significantly younger, more likely to be obese, had larger uteri and more numerous leiomyomata, more severe symptoms, and poorer quality-of-life scores before treatment. It is feasible to collect prospective data on new technologies. The FIBROID Registry prospectively collected data on more than 3,000 women undergoing uterine artery embolization for symptomatic leiomyomata. Baseline patient characteristics of this patient population seem to be similar to those of women undergoing other procedures for leiomyomata. III.

Rationale and design of the PREDICT (Plaque Registration and Evaluation Detected In Computed Tomography) registry.

PubMed

Yamamoto, Hideya; Awai, Kazuo; Kuribayashi, Sachio; Kihara, Yasuki

2014-01-01

At least two-thirds of cases of acute coronary syndrome are caused by disruption of an atherosclerotic plaque. The natural history of individual plaques is unknown and needs to be established. The Plaque Registration and Evaluation Detected In Computed Tomography (PREDICT) registry is a prospective, multicenter, longitudinal, observational registry. This registry was designed to examine the relationships among coronary CT angiography (CTA) findings and clinical findings, mortality, and morbidity. The relationships among progression of coronary atherosclerosis, including changes in plaque characteristics on coronary CTA, and serum lipid levels and modification of coronary risk factors will also be evaluated. From October 2009 to December 2012, 3015 patients who underwent coronary CTA in 29 centers in Japan were enrolled. These patients were followed for 2 years. The primary end points were considered as all-cause mortality and major cardiac events, including cardiac death, nonfatal myocardial infarction, and unstable angina that required hospitalization. The secondary end points were heart failure that required administration of diuretics, target vessel revascularization, cerebral infarction, peripheral arterial disease, and invasive coronary angiography. Blood pressure, serum lipid, and C-reactive protein levels and all cardiovascular events were recorded at 1 and 2 years. If the initial coronary CTA showed any stenosis or plaques, follow-up coronary CTA was scheduled at 2 years to determine changes in coronary lesions, including changes in plaque characteristics. Analysis of the PREDICT registry data will clarify the relationships between coronary CTA findings and cardiovascular mortality and morbidity in a collaborative multicenter fashion. This trial is registered at www.clinicaltrials.gov as NCT 00991835. Copyright © 2014 Society of Cardiovascular Computed Tomography. All rights reserved.

76 FR 21909 - Submission for OMB Review; Comment Request

Federal Register 2010, 2011, 2012, 2013, 2014

2011-04-19

... the title, of a statewide automated data processing and information retrieval system. The system must.... Description: The information being collected is mandated by Section 454(16) of the Social Security Act which... State Case Registry (SCR) within their statewide automated child support systems, to include information...

45 CFR 303.7 - Provision of services in interstate IV-D cases.

Code of Federal Regulations, 2010 CFR

2010-10-01

... ENFORCEMENT (CHILD SUPPORT ENFORCEMENT PROGRAM), ADMINISTRATION FOR CHILDREN AND FAMILIES, DEPARTMENT OF HEALTH AND HUMAN SERVICES STANDARDS FOR PROGRAM OPERATIONS § 303.7 Provision of services in interstate IV... central registry responsible for receiving, distributing and responding to inquiries on all incoming...

Growth hormone treatment for childhood short stature and risk of stroke in early adulthood.

PubMed

Poidvin, Amélie; Touzé, Emmanuel; Ecosse, Emmanuel; Landier, Fabienne; Béjot, Yannick; Giroud, Maurice; Rothwell, Peter M; Carel, Jean-Claude; Coste, Joël

2014-08-26

We investigated the incidence of stroke and stroke subtypes in a population-based cohort of patients in France treated with growth hormone (GH) for short stature in childhood. Adult morbidity data were obtained in 2008-2010 for 6,874 children with idiopathic isolated GH deficiency or short stature who started GH treatment between 1985 and 1996. Cerebrovascular events were validated using medical reports and imaging data and classified according to standard definitions of subarachnoid hemorrhage, intracerebral hemorrhage, and ischemic stroke. Case ascertainment completeness was estimated with capture-recapture methods. The incidence of stroke and of stroke subtypes was calculated and compared with population values extracted from registries in Dijon and Oxford, between 2000 and 2012. Using both Dijon and Oxford population-based registries as references, there was a significantly higher risk of stroke among patients treated with GH in childhood. The excess risk of stroke was mainly attributable to a very substantially and significantly higher risk of hemorrhagic stroke (standardized incidence ratio from 3.5 to 7.0 according to the registry rates considered, and accounting or not accounting for missed cases), and particularly subarachnoid hemorrhage (standardized incidence ratio from 5.7 to 9.3). We report a strong relationship between hemorrhagic stroke and GH treatment in childhood for isolated growth hormone deficiency or childhood short stature. Patients treated with GH worldwide should be advised about this association and further studies should evaluate the potentially causal role of GH treatment in these findings. © 2014 American Academy of Neurology.

Acute kidney injury and edaravone in acute ischemic stroke: the Fukuoka Stroke Registry.

PubMed

Kamouchi, Masahiro; Sakai, Hironori; Kiyohara, Yutaka; Minematsu, Kazuo; Hayashi, Kunihiko; Kitazono, Takanari

2013-11-01

A free radical scavenger, edaravone, which has been used for the treatment of ischemic stroke, was reported to cause acute kidney injury (AKI) as a fatal adverse event. The aim of the present study was to clarify whether edaravone is associated with AKI in patients with acute ischemic stroke. From the Fukuoka Stroke Registry database, 5689 consecutive patients with acute ischemic stroke who were hospitalized within 24 hours of the onset of symptoms were included in this study. A logistic regression analysis for the Fukuoka Stroke Registry cohort was done to identify the predictors for AKI. A propensity score-matched nested case-control study was also performed to elucidate any association between AKI and edaravone. Acute kidney injury occurred in 128 of 5689 patients (2.2%) with acute ischemic stroke. A multivariate analysis revealed that the stroke subtype, the basal serum creatinine level, and the presence of infectious complications on admission were each predictors of developing AKI. In contrast, a free radical scavenger, edaravone, reduced the risk of developing AKI (multivariate-adjusted odds ratio [OR] .45, 95% confidence interval [CI] .30-.67). Propensity score-matched case-control study confirmed that edaravone use was negatively associated with AKI (propensity score-adjusted OR .46, 95% CI .29-.74). Although AKI has a significant impact on the clinical outcome of hospital inpatients, edaravone has a protective effect against the development of AKI in patients with acute ischemic stroke. Copyright © 2013 National Stroke Association. Published by Elsevier Inc. All rights reserved.

Vaginal prolapse surgery with transvaginal mesh: results of the Austrian registry.

PubMed

Bjelic-Radisic, V; Aigmueller, T; Preyer, O; Ralph, G; Geiss, I; Müller, G; Riss, P; Klug, P; Konrad, M; Wagner, G; Medl, M; Umek, W; Lozano, P; Tamussino, K; Tammaa, A

2014-08-01

Several mesh repair systems for pelvic organ prolapse (POP) were introduced into clinical practice with limited data on safety, complications or success rates, and impact on sexual function. The Austrian Urogynecology Working Group initiated a registry to assess the use of transvaginal mesh devices for POP repair. We looked at perioperative data, as well as outcomes at 3 and 12 months. Between 2006 and 2010 a total of 20 gynecology departments in Austria participated in the Transvaginal Mesh Registry. Case report forms were completed to gather data on operations, the postoperative course, and results at 3 and 12 months. A total of 726 transvaginal procedures with 10 different transvaginal kits were registered. Intra- and perioperative complications were reported in 6.8%. The most common complication was increased intraoperative bleeding (2.2%). Bladder and bowel perforation occurred in 6 (0.8%) and 2 (0.3%) cases. Mesh exposure was seen in 11% at 3 and in 12% at 12 months. 24 (10%) previously asymptomatic patients developed bowel symptoms by 1 year. De novo bladder symptoms were reported in 39 (10%) at 3 and in 26 (11%) at 12 months. Dyspareunia was reported by 7% and 10% of 265 and 181 sexually active patients at 3 and 12 months postoperatively respectively. The 6.8% rate of intra- and perioperative complications is in line with previous reports. Visceral injury was rare. The 12% rate of mesh exposure is consistent with previous series.

Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

PubMed

Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

2017-11-01

The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

Prediagnostic alcohol consumption and colorectal cancer survival: The Colon Cancer Family Registry.

PubMed

Phipps, Amanda I; Robinson, Jamaica R; Campbell, Peter T; Win, Aung Ko; Figueiredo, Jane C; Lindor, Noralane M; Newcomb, Polly A

2017-05-15

Although previous studies have noted an increased risk of colorectal cancer (CRC) among moderate to heavy alcohol consumers in comparison with nondrinkers, the relation between alcohol consumption and CRC survival remains unclear. Cases of incident invasive CRC diagnosed between 1997 and 2007 were identified via population-based cancer registries at 4 study sites in the Colon Cancer Family Registry. Study participants completed a risk-factor questionnaire on prediagnostic behaviors, including wine, beer, and liquor consumption, at the baseline. Prospective follow-up for survival was conducted for 4966 CRC cases. Cox regression was used to compare nondrinkers with individuals who consumed, on average, 1 or more servings of alcohol per day in the years preceding their CRC diagnosis with respect to overall and disease-specific survival. Separate analyses by beverage type, stratified by patient and tumor attributes, were also performed. All models were adjusted for the age at diagnosis, sex, study site, year of diagnosis, smoking history, body mass index, and education. Prediagnostic beer and liquor consumption was not associated with CRC survival; however, higher levels of wine consumption were modestly associated with a better prognosis overall (CRC-specific hazard ratio [HR], 0.70, 95% confidence interval [CI], 0.48-1.03; overall HR, 0.70; 95% CI, 0.53-0.94). Similar patterns were noted in stratified analyses. These findings suggest that prediagnostic wine consumption is modestly associated with more favorable survival after CRC. Cancer 2017;123:1035-43. © 2016 American Cancer Society. © 2016 American Cancer Society.

Safety and efficacy of drugs in pregnancy.

PubMed

Knoppert, David

2011-01-01

Although most drugs are used to treat chronic or pregnancy-induced conditions during pregnancy and lactation, very few are studied in pregnant or breastfeeding women. The information we have on drugs taken during pregnancy and lactation is usually obtained after market approval through published case reports or case series and from pregnancy exposure or retrospective birth defect registries. Furthermore, generic drugs approved for use in this vulnerable population may be approved based on results from a male trial population. This disregards the changes that can occur during pregnancy which can affect the pharmacokinetics of drugs. In an effort to improve the information provided to prescribers, in 2008 the United States Food and Drug Administration proposed a change in product labelling where information from pregnancy exposure registries would be required. As of 2009, European Medicines Agency requires additional statements on use during pregnancy within drug labelling information. In Canada, it is anticipated that the efficacy and safety of drugs in pregnancy will be included under the Drug Safety and Effectiveness Network initiative, and that this will offer a unified approach for such assessments. Pregmedic, a non-profit organization for the advancement of safe and effective use of drugs in pregnancy, has presented a number of proposals and draft guidelines to Health Canada on the inclusion of pregnant women in pharmacokinetic studies and the establishment of registries for women who take drugs during pregnancy. Pregmedic advocates for ensuring that drugs indicated for women are studied in women.

Cancer incidence and mortality in Mongolia - National Registry Data.

PubMed

Sandagdorj, Tuvshingerel; Sanjaajamts, Erdenechimeg; Tudev, Undarmaa; Oyunchimeg, Dondov; Ochir, Chimedsuren; Roder, David

2010-01-01

The National Cancer Registry of Mongolia began as a hospital-based registry in the early 1960s but then evolved to have a population-wide role. The Registry provides the only cancer data available from Mongolia for international comparison. The descriptive data presented in this report are the first to be submitted on cancer incidence in Mongolia to a peer-reviewed journal. The purpose was to describe cancer incidence and mortality for all invasive cancers collectively, individual primary sites, and particularly leading sites, and consider cancer control opportunities. This study includes data on new cancer cases registered in Mongolia in 2003-2007. Incidence and mortality rates were calculated as mean annual numbers per 100,000 residents. Age-standardized incidence (ASR) and age-standardized mortality (ASMR) rates were calculated from age-specific rates by weighting directly to the World Population standard. Between 2003 and 2007, 17,271 new cases of invasive cancer were recorded (52.2% in males, 47.7% in females). The five leading primary sites in males were liver, stomach, lung, esophagus, and colon/rectum; whereas in females they were liver, cervix, stomach, esophagus and breast. ASRs were lower in females than males for cancers of the liver at 63.0 and 99.1 per 100,000 respectively; cancers of the stomach at 19.1 and 42.1 per 100,000 respectively; and cancers of the lung at 8.3 and 33.2 per 100,000 respectively. Liver cancer was the most common cause of death in each gender, the ASMR being lower for females than males at 60.6 compared with 94.8 per 100,000. In females the next most common sites of cancer death were the stomach and esophagus, whereas in males, they were the stomach and lung. Available data indicate that ASRs of all cancers collectively have increased over the last 20 years. Rates are highest for liver cancer, at about four times the world average. The most common cancers are those with a primary site of liver, stomach and esophagus, for which cases fatality rates are high in all populations. Emphasis is given in the National Cancer Control Program (NCCP) to limiting treatment for these and other high-fatality cancers to the small sub-set of potentially curable cases, while focusing on palliative care and patient support for the remainder. Meanwhile opportunities are being pursued to prevent liver cancer through hepatitis B vaccination and lung cancer through tobacco control, and to reduce cervical cancer mortality by finding lesions at a pre-malignant or early invasive stage.

The results of interconnection of the evidence of professional exposure to genotoxic factors (regex) and cancer registry in the Czech Republic.

PubMed

Lehocká, Hana; Závacká, Ivona; Vavrošová, Jana; Janout, Vladimír

2017-03-01

The aim of this study is to analyze the genotoxic risks in the Moravian-Silesian Region in the Czech Republic and assess the significance of genotoxic factors in the etiology of cancer by bringing together the Registry of Occupational Exposure to Genotoxic Factors and the Cancer Registry and compare the rate of detected cancer in persons exposed to genotoxic factors via their work in the Moravian-Silesian Region with the occurrence of cancer in the population of the Czech Republic. The results show: (a) For the monitored group (748 person) for the period 1996-2008, according to gender, was no statistically significant difference in the incidence of oncological diseases compared to the population of the Czech Republic. (b) But statistically significant difference was found in the cases of oncological diseases in groups according to % AB.C. using the Cytogenetic analysis of human peripheral lymphocytes (CAPL). The highest incidence was in the group with a higher incidence of % AB.C. High values of % AB.C. may predict the development of oncological diseases.

MDS classification is improving in an era of the WHO 2016 criteria of MDS: A population-based analysis among 9159 MDS patients diagnosed in the Netherlands.

PubMed

Dinmohamed, Avinash G; Visser, Otto; Posthuma, Eduardus F M; Huijgens, Peter C; Sonneveld, Pieter; van de Loosdrecht, Arjan A; Jongen-Lavrencic, Mojca

2017-10-01

Morphologic and cytogenetic assessments are required to characterize diagnostic and prognostic features of myelodysplastic syndromes (MDS). We assessed whether these assessments were performed among newly diagnosed MDS patients in the Netherlands. MDS cases were retrieved from the nationwide Netherlands Cancer Registry (N=9159; period 2001-2014) and the regional PHAROS MDS registry (N=676; period 2008-2011). The proportion of unclassified MDS decreased from 58% in 2001 to 13% in 2014. Data from the more detailed PHAROS registry revealed that the degree of bone marrow dysplasia was only reported in ∼30% of all evaluable bone marrow aspirates. Further, the International Prognostic Scoring System was undetermined in 55% of patients, primarily owing to unperformed cytogenetics in 46% of patients. The classification of MDS is improving in the Netherlands. Nevertheless, particular diagnostic and prognostic procedures that are essential for the diagnosis and subsequent treatment decision-making of MDS were not fully utilized in particular patient subsets. Copyright © 2017 Elsevier Ltd. All rights reserved.

Inflammatory bowel disease in pediatric patients: Characteristics of newly diagnosed patients from the CEDATA-GPGE Registry.

PubMed

Buderus, Stephan; Scholz, Dietmar; Behrens, Rolf; Classen, Martin; De Laffolie, Jan; Keller, Klaus-Michael; Zimmer, Klaus-Peter; Koletzko, Sibylle

2015-02-20

Inflammatory bowel disease (IBD) can arise at any age, with peak incidence in adolescence and young adulthood. A registry of pediatric cases of IBD offers the opportunity to document their diagnosis and treatment, with the ultimate aim of improving diagnosis and treatment in the future. In the German-language CEDATA-GPGE registry, 3991 cases of IBD in patients less than 18 years of age were documented from 2004 to 2014. The 1257 patients who were prospectively included in the registry upon diagnosis and whose further course was documented for at least three months were analyzed in two separate groups--under 10 years old, and 10 years and above--with respect to the type and duration of their symptoms until diagnosis, the completeness of the diagnostic evaluation, the disease phenotype, and the initial treatment. Of the 958 patients for whom full documentation was available, 616 (64.3%) had Crohn's disease (CD), 278 (29%) had ulcerative colitis (UC), 64 (6.7%) had an unclassified IBD, and 23.2% were under 10 years old. The latency to diagnosis was longer for CD than for UC (0.5 versus 0.3 years), regardless of age. 62.5% of the CD patients had ileocolonic involvement, and more than half had involvement of the upper gastrointestinal tract. 71% of the patients with UC had subtotal colitis or pancolitis. Continuous improvement was seen in diagnostic assessment according to published guidelines. For example, in 2004/2005, 69% of patients were evaluated endoscopically with ileocolonoscopy and esophagogastroduodenoscopy; this fraction had risen to nearly 100% by 2013/2014. Similarly, the percentage of patients who underwent a diagnostic evaluation of the small intestine, as recommended, rose from 41.2% to 60.9% over the same period. The most common initial treatments were 5- amino - salicylates (86.8% CD, 100% UC) and glucocorticoids (60.6% CD, 65.6% UC). 32% of the patients with CD received exclusive enteral nutrition therapy. Most of these pediatric patients with IBD, whether in the younger or the older age group, had extensive bowel involvement at the time of diagnosis. The registry data imply that improvement in clinical course may be achieved by shortening the time to diagnosis and by closer adherence to the diagnostic and therapeutic guidelines.

Review of U.S. registries for psoriasis.

PubMed

Amin, Mina; No, Daniel J; Wu, Jashin J

2017-12-01

Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

Molecular Biology and Prevention of Endometrial Cancer

DTIC Science & Technology

2006-07-01

adenocarcinoma cases from the International DES Registry (IDESR) was analyzed for MSI 3) A case-control study of the CASH database was performed to...that have arisen in women exposed to DES in- utero , for methylation and mutation of PTEN and MLH1 in order to determine if estrogen induces genetic...and analyzed, which would most likely take an additional 3-6 months after enrollment. Aim 2: To analyze vaginal and cervical adenocarcinomas

Molecular Biology and Prevention of Endometrial Cancer. Addendum

DTIC Science & Technology

2008-07-01

2) A subset of adenocarcinoma cases from the International DES Registry (IDESR) was analyzed for MSI 3) A case-control study of the CASH database... DES in- utero , for methylation and mutation of PTEN and MLH1 in order to determine if estrogen induces genetic alterations in these tumors...current trial within the “Gynecologic Disease Program”. Aim 2: To analyze vaginal and cervical adenocarcinomas , that have arisen in women exposed to

Arthroplasty Implant Registries Over the Past Five Decades: Development, Current, and Future Impact.

PubMed

Malchau, Henrik; Garellick, Göran; Berry, Daniel; Harris, William H; Robertson, Otto; Kärrlholm, Johan; Lewallen, David; Bragdon, Charles R; Lidgren, Lars; Herberts, Peter

2018-04-16

Local, regional and national registries have played an important role the development of hip and knee arthroplasty and the treatment of patients with various maladies of these joints. Four arthroplasty registries stand out as leading forces behind the drive to popularize the use of registries and pursue the concept of evidence based medicine. The Mayo registry, started by Mark Coventry, is recognized as the oldest continuing registry for arthroplasty. The Harris Registry at Massachusetts General Hospital, along with the Mayo Registry, has greatly contributed to the advancement of arthroplasty surgery and have served an important role of identifying poorly performing implants and techniques in the United States. The Swedish Knee Arthroplasty Registry is the oldest national registry dedicated to joint arthroplasty and along with the Swedish Hip Arthroplasty Registry have established the infrastructure, analysis and reporting mechanisms and leadership that has enabled other countries to subsequently develop national registries around the world. As more countries have adopted the concept of national registries, a new area of research is possible by pooling the resources of large registries as is now occurring with the Nordic countries. Several international organizations have been formed to promote future collaboration and develop international standards. The process of globalization of registries is a result of continued efforts over the past 50 years in improving and disseminating the knowledge gained from the early registries. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

The Michigan Spine Surgery Improvement Collaborative: a statewide Collaborative Quality Initiative.

PubMed

Chang, Victor; Schwalb, Jason M; Nerenz, David R; Pietrantoni, Lisa; Jones, Sharon; Jankowski, Michelle; Oja-Tebbe, Nancy; Bartol, Stephen; Abdulhak, Muwaffak

2015-12-01

OBJECT Given the scrutiny of spine surgery by policy makers, spine surgeons are motivated to demonstrate and improve outcomes, by determining which patients will and will not benefit from surgery, and to reduce costs, often by reducing complications. Insurers are similarly motivated. In 2013, Blue Cross Blue Shield of Michigan (BCBSM) and Blue Care Network (BCN) established the Michigan Spine Surgery Improvement Collaborative (MSSIC) as a Collaborative Quality Initiative (CQI). MSSIC is one of the newest of 21 other CQIs that have significantly improved-and continue to improve-the quality of patient care throughout the state of Michigan. METHODS MSSIC focuses on lumbar and cervical spine surgery, specifically indications such as stenosis, disk herniation, and degenerative disease. Surgery for tumors, traumatic fractures, deformity, scoliosis, and acute spinal cord injury are currently not within the scope of MSSIC. Starting in 2014, MSSIC consisted of 7 hospitals and in 2015 included another 15 hospitals, for a total of 22 hospitals statewide. A standardized data set is obtained by data abstractors, who are funded by BCBSM/BCN. Variables of interest include indications for surgery, baseline patient-reported outcome measures, and medical history. These are obtained within 30 days of surgery. Outcome instruments used include the EQ-5D general health state score (0 being worst and 100 being the best health one can imagine) and EQ-5D-3 L. For patients undergoing lumbar surgery, a 0 to 10 numeric rating scale for leg and back pain and the Oswestry Disability Index for back pain are collected. For patients undergoing cervical surgery, a 0 to 10 numeric rating scale for arm and neck pain, Neck Disability Index, and the modified Japanese Orthopaedic Association score are collected. Surgical details, postoperative hospital course, and patient-reported outcome measures are collected at 90-day, 1-year, and 2-year intervals. RESULTS As of July 1, 2015, a total of 6397 cases have been entered into the registry. This number reflects 4824 eligible cases with confirmed surgery dates. Of these 4824 eligible cases, 3338 cases went beyond the 120-day window and were considered eligible for the extraction of surgical details, 90-day outcomes, and adverse events. Among these 3338 patients, there are a total of 2469 lumbar cases, 862 cervical cases, and 7 combined procedures that were entered into the registry. CONCLUSIONS In addition to functioning as a registry, MSSIC is also meant to be a platform for quality improvement with the potential for future initiatives and best practices to be implemented statewide in order to improve quality and lower costs. With its current rate of recruitment and expansion, MSSIC will provide a robust platform as a regional prospective registry. Its unique funding model, which is supported by BCBSM/BCN, will help ensure its longevity and viability, as has been observed in other CQIs that have been active for several years.

Review of patient registries in dermatology.

PubMed

DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

2016-10-01

Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

Simultaneous homicide-suicide: a case report of double drowning.

PubMed

Melez, İpek Esen; Avşar, Abdullah; Başpınar, Bünyamin; Melez, Deniz Oğuzhan; Şahin, Fatih; Özdeş, Taşkın

2014-09-01

Homicide-suicide is a tragic phenomenon which typically does not result in a criminal charge or trial. However, correct diagnosis and classification of homicide-suicide cases are important to determine the perpetrators and dynamics of each category properly. The deaths in the homicide-suicide acts can be divided into two categories with respect to the number of involved individuals: dyadic deaths and triple or multiple deaths. These two categories can also be divided into two subgroups according to the chronology of the incidents: simultaneous deaths and consecutive deaths. Herein, a simultaneous homicide-suicide case of a father and daughter where both deaths occurred through drowning which was not found in the selected literature review and where the victim was a child is presented. The article aims to clarify the term discrepancies about multiple death cases in the literature and to discuss the pathological and psychosocial characteristics of the simultaneous dyadic death cases. © 2014 American Academy of Forensic Sciences.

Application of data mining techniques and data analysis methods to measure cancer morbidity and mortality data in a regional cancer registry: The case of the island of Crete, Greece.

PubMed

Varlamis, Iraklis; Apostolakis, Ioannis; Sifaki-Pistolla, Dimitra; Dey, Nilanjan; Georgoulias, Vassilios; Lionis, Christos

2017-07-01

Micro or macro-level mapping of cancer statistics is a challenging task that requires long-term planning, prospective studies and continuous monitoring of all cancer cases. The objective of the current study is to present how cancer registry data could be processed using data mining techniques in order to improve the statistical analysis outcomes. Data were collected from the Cancer Registry of Crete in Greece (counties of Rethymno and Lasithi) for the period 1998-2004. Data collection was performed on paper forms and manually transcribed to a single data file, thus introducing errors and noise (e.g. missing and erroneous values, duplicate entries etc.). Data were pre-processed and prepared for analysis using data mining tools and algorithms. Feature selection was applied to evaluate the contribution of each collected feature in predicting patients' survival. Several classifiers were trained and evaluated for their ability to predict survival of patients. Finally, statistical analysis of cancer morbidity and mortality rates in the two regions was performed in order to validate the initial findings. Several critical points in the process of data collection, preprocessing and analysis of cancer data were derived from the results, while a road-map for future population data studies was developed. In addition, increased morbidity rates were observed in the counties of Crete (Age Standardized Morbidity/Incidence Rates ASIR= 396.45 ± 2.89 and 274.77 ±2.48 for men and women, respectively) compared to European and world averages (ASIR= 281.6 and 207.3 for men and women in Europe and 203.8 and 165.1 in world level). Significant variation in cancer types between sexes and age groups (the ratio between deaths and reported cases for young patients, less than 34 years old, is at 0.055 when the respective ratio for patients over 75 years old is 0.366) was also observed. This study introduced a methodology for preprocessing and analyzing cancer data, using a combination of data mining techniques that could be a useful tool for other researchers and further enhancement of the cancer registries. Copyright © 2017 Elsevier B.V. All rights reserved.

A case of triple volvulus.

PubMed

Elsharif, M; Basu, I; Phillips, D

2012-03-01

Situs inversus is a rare congenital anomaly that has reportedly been associated with caecal volvulus. We describe a case of partial situs inversus complicated by intestinal obstruction secondary to three simultaneously occurring volvuli of the stomach, caecum and sigmoid colon. To our knowledge, this is the first documented case in the literature of multiple, simultaneously occurring volvuli.

A brief review of vaccination coverage in immunization registries.

PubMed

Goldstein, Neal D; Maiese, Brett A

2011-01-01

Immunization registries are effective electronic tools for assessing vaccination coverage, but are only as good as the information reported to them. This review summarizes studies through August 2010 on vaccination coverage in registries and identifies key characteristics of successful registries. Based on the current state of registries, paper-based charts combined with electronic registry reporting provide the most cohesive picture of coverage. To ultimately supplant paper charts, registries must exhibit increased coverage and participation.

Are the current notification criteria for Lyme borreliosis in Norway suitable? Results of an evaluation of Lyme borreliosis surveillance in Norway, 1995-2013.

PubMed

MacDonald, Emily; Vestrheim, Didrik Frimann; White, Richard A; Konsmo, Kirstin; Lange, Heidi; Aase, Audun; Nygård, Karin; Stefanoff, Pawel; Aaberge, Ingeborg; Vold, Line

2016-08-05

The approach to surveillance of Lyme borreliosis varies between countries, depending on the purpose of the surveillance system and the notification criteria used, which prevents direct comparison of national data. In Norway, Lyme borreliosis is notifiable to the Surveillance System for Communicable Diseases (MSIS). The current notification criteria include a combination of clinical and laboratory results for borrelia infection (excluding Erythema migrans) but there are indications that these criteria are not followed consistently by clinicians and by laboratories. Therefore, an evaluation of Lyme borreliosis surveillance in Norway was conducted to describe the purpose of the system and to assess the suitability of the current notification criteria in order to identify areas for improvement. The CDC Guidelines for Evaluation of Surveillance Systems were used to develop the assessment of the data quality, representativeness and acceptability of MSIS for surveillance of Lyme borreliosis. Data quality was assessed through a review of data from 1996 to 2013 in MSIS and a linkage of MSIS data from 2008 to 2012 with data from the Norwegian Patient Registry (NPR). Representativeness and acceptability were assessed through a survey sent to 23 diagnostic laboratories. Completeness of key variables for cases reported to MSIS was high, except for geographical location of exposureThe NPR-MSIS linkage identified 1047 cases in both registries, while 363 were only reported to MSIS and 3914 were only recorded in NPR. A higher proportion of cases found in both registries were recorded as neuroborreliosis in MSIS (84.4 %) than those cases found only in MSIS (20.1 %). The trend (average yearly increase or decrease in reported cases) of neuroborreliosis in MSIS was not significantly different from the trend for all other clinical manifestations recorded in MSIS in negative binomial regression (p = 0.3). The 16 surveyed laboratories (response proportion 70 %) indicated differences in testing practices and low acceptability of the notification criteria. Given the challenges associated with diagnosing Lyme borreliosis, the selected notification criteria should be closely linked with the purpose of the surveillance system. Restricting reportable Lyme borreliosis to neuroborreliosis may increase validity, while a more sensitive case definition (potentially including erythema migrans) may better reflect the true burden of disease. We recommend revising the current notification criteria in Norway to ensure that they are unambiguous for clinicians and laboratories.

The EuroMyositis registry: an international collaborative tool to facilitate myositis research.

PubMed

Lilleker, James B; Vencovsky, Jiri; Wang, Guochun; Wedderburn, Lucy R; Diederichsen, Louise Pyndt; Schmidt, Jens; Oakley, Paula; Benveniste, Olivier; Danieli, Maria Giovanna; Danko, Katalin; Thuy, Nguyen Thi Phuong; Vazquez-Del Mercado, Monica; Andersson, Helena; De Paepe, Boel; deBleecker, Jan L; Maurer, Britta; McCann, Liza J; Pipitone, Nicolo; McHugh, Neil; Betteridge, Zoe E; New, Paul; Cooper, Robert G; Ollier, William E; Lamb, Janine A; Krogh, Niels Steen; Lundberg, Ingrid E; Chinoy, Hector

2018-01-01

The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtypes, extramuscular involvement, environmental exposures and medications were investigated. Of 3067 IIM cases, 69% were female. The most common IIM subtype was dermatomyositis (DM) (31%). Smoking was more frequent in connective tissue disease overlap cases (45%, OR 1.44, 95% CI 1.09 to 1.90, p=0.012). Smoking was associated with interstitial lung disease (ILD) (OR 1.32, 95% CI 1.06 to 1.65, p=0.013), dysphagia (OR 1.43, 95% CI 1.16 to 1.77, p=0.001), malignancy ever (OR 1.78, 95% CI 1.36 to 2.33, p<0.001) and cardiac involvement (OR 2.40, 95% CI 1.60 to 3.60, p<0.001).Dysphagia occurred in 39% and cardiac involvement in 9%; either occurrence was associated with higher Health Assessment Questionnaire (HAQ) scores (adjusted OR 1.79, 95% CI 1.43 to 2.23, p<0.001). HAQ scores were also higher in inclusion body myositis cases (adjusted OR 3.85, 95% CI 2.52 to 5.90, p<0.001). Malignancy (ever) occurred in 13%, most commonly in DM (20%, OR 2.06, 95% CI 1.65 to 2.57, p<0.001).ILD occurred in 30%, most frequently in antisynthetase syndrome (71%, OR 10.7, 95% CI 8.6 to 13.4, p<0.001). Rash characteristics differed between adult-onset and juvenile-onset DM cases ('V' sign: 56% DM vs 16% juvenile-DM, OR 0.16, 95% CI 0.07 to 0.36, p<0.001). Glucocorticoids were used in 98% of cases, methotrexate in 71% and azathioprine in 51%. This large multicentre cohort demonstrates the importance of extramuscular involvement in patients with IIM, its association with smoking and its influence on disease severity. Our findings emphasise that IIM is a multisystem inflammatory disease and will help inform prognosis and clinical management of patients. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

2002 Annual Report of the Korea Central Cancer Registry: Based on Registered Data from 139 Hospitals

PubMed Central

Shin, Hai-Rim; Jung, Kyu-Won; Won, Young-Joo

2004-01-01

Purpose To estimate the number of cancer cases during 2002 in Korea through a nationwide hospital based cancer registration by the Korea Central Cancer Registry (KCCR). Materials and Methods One hundred and thirty nine hospitals participated in the KCCR program in 2002. Cancer cases were coded and classified according to the International Classification of Diseases for Oncology 2nd edition (ICD-O-2). The software program "IARC Check" was used to evaluate the quality of registered cancer cases. Of the 122,770 malignancies registered, 11,732 (9.6%) duplicated malignancies were excluded. Among the remaining 102,677 malignancies, 3,652 (3.6%) cases with carcinoma in situ (Morphology code/2) were separated. Finally, 99,025 malignancies were analyzed. Results Of the total of 99,025 malignancies, 55,398 (55.9%) cases were males and 43,627 (44.1%) were females. More than one third of cases were from the elderly (65 years old and more). The six leading primary cancer sites in the order of their relative frequency, were stomach (24.0%), followed by the lung (16.0%), the liver (15.4%), the colorectum (11.6%), the bladder (3.2%), and the prostate (3.0%) among males. In females, the breast (16.8%) was the common cancer site, followed by the stomach (15.3%), the colorectum (10.7%), the thyroid gland (9.5%), the cervix uteri (9.1%), and the lung (6.6%). Conclusion With the continued increase in cancer cases especially prostate cancer among males and thyroid cancer among females, the total number of registered cancer cases in Korea continues to rapidly increase. PMID:20396549

[Considerations about the epidemiologic surveillance system on mesothelioma in Tuscany (Italy) after 25 years of activity].

PubMed

Chellini, Elisabetta; Martini, Andrea; Cacciarini, Valentina; Badiali, Anna Maria

2013-01-01

To present problems and opportunities related to the operating procedures developed by the Tuscan epidemiological surveillance system on mesothelioma during its 25 years of activity. All 1,224 mesotheliomas, registered up to 31.12. 2011, diagnosed in Tuscan residents during 1988-2009 by the Tuscan Operating Centre of the Italian registry, have been considered. In order to evaluate accuracy and completeness of cases, the following indicators by period are used for pleural mesotheliomas diagnosed during 1988-2009: the distribution of the sources of cases' diagnosis and report to the regional registry, the latency time between diagnosis and report, the age and sex specific rates, the ratio between standardized mortality and incidence rates. The distribution of type of interview and exposure classification by period for all cases were used to evaluate the collected and classified exposure information. Histology with immunohistochemistry became the chosen method (97.4% of histological cases in 2005- 2009). Since the second half of the Nineties, other Italian regional Operating Centres and, more recently, the Workers Compensation Authority (INAIL) became new important sources of case report. Nowadays, the mortality/incidence ratio is closer to 1. The latency time between diagnosis and case report have been reducing with a consequent increase in direct interviews to cases (from 20.3% in 1988-1993 to 71.4% in 2005-2009) and in exposure information and classification quality. The regional network with the effective cooperation of the Local Health Authorities produced relevant improvements in the quality of the epidemiological surveillance system. It is hoped that the new revision of the national Guidelines will succeed in taking into consideration all the improvements made by the surveillance system in order to get over the difficulties observed in defining and classifying cases and their asbestos exposure.

Dementia registries around the globe and their applications: A systematic review.

PubMed

Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

2017-09-01

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

A Prototype Publishing Registry for the Virtual Observatory

NASA Astrophysics Data System (ADS)

Williamson, R.; Plante, R.

2004-07-01

In the Virtual Observatory (VO), a registry helps users locate resources, such as data and services, in a distributed environment. A general framework for VO registries is now under development within the International Virtual Observatory Alliance (IVOA) Registry Working Group. We present a prototype of one component of this framework: the publishing registry. The publishing registry allows data providers to expose metadata descriptions of their resources to the VO environment. Searchable registries can harvest the metadata from many publishing registries and make them searchable by users. We have developed a prototype publishing registry that data providers can install at their sites to publish their resources. The descriptions are exposed using the Open Archive Initiative (OAI) Protocol for Metadata Harvesting. Automating the input of metadata into registries is critical when a provider wishes to describe many resources. We illustrate various strategies for such automation, both currently in use and planned for the future. We also describe how future versions of the registry can adapt automatically to evolving metadata schemas for describing resources.

Current situation and challenge of registry in China.

PubMed

Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

2014-09-01

Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

Designing exposure registries for improved tracking of occupational exposure and disease.

PubMed

Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

2016-06-27

Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

Prehospital Interventions During Mass-Casualty Events in Afghanistan: A Case Analysis.

PubMed

Schauer, Steven G; April, Michael D; Simon, Erica; Maddry, Joseph K; Carter, Robert; Delorenzo, Robert A

2017-08-01

Mass-casualty (MASCAL) events are known to occur in the combat setting. There are very limited data at this time from the Joint Theater (Iraq and Afghanistan) wars specific to MASCAL events. The purpose of this report was to provide preliminary data for the development of prehospital planning and guidelines. Cases were identified using the Department of Defense (DoD; Virginia USA) Trauma Registry (DoDTR) and the Prehospital Trauma Registry (PHTR). These cases were identified as part of a research study evaluating Tactical Combat Casualty Care (TCCC) guidelines. Cases that were designated as or associated with denoted MASCAL events were included. Data Fifty subjects were identified during the course of this project. Explosives were the most common cause of injuries. There was a wide range of vital signs. Tourniquet placement and pressure dressings were the most common interventions, followed by analgesia administration. Oral transmucosal fentanyl citrate (OTFC) was the most common parenteral analgesic drug administered. Most were evacuated as "routine." Follow-up data were available for 36 of the subjects and 97% were discharged alive. The most common prehospital interventions were tourniquet and pressure dressing hemorrhage control, along with pain medication administration. Larger data sets are needed to guide development of MASCAL in-theater clinical practice guidelines. Schauer SG , April MD , Simon E , Maddry JK , Carter R III , Delorenzo RA . Prehospital interventions during mass-casualty events in Afghanistan: a case analysis. Prehosp Disaster Med. 2017;32(4):465-468.

The potential value of sibling controls compared with population controls for association studies of lifestyle-related risk factors: an example from the Breast Cancer Family Registry.

PubMed

Milne, Roger L; John, Esther M; Knight, Julia A; Dite, Gillian S; Southey, Melissa C; Giles, Graham G; Apicella, Carmel; West, Dee W; Andrulis, Irene L; Whittemore, Alice S; Hopper, John L

2011-10-01

A previous Australian population-based breast cancer case-control study found indirect evidence that control participation, although high, was not random. We hypothesized that unaffected sisters may provide a more appropriate comparison group than unrelated population controls. Three population-based case-control-family studies of breast cancer in women of white European origin were carried out by the Australian, Ontario and Northern California sites of the Breast Cancer Family Registry. We compared risk factors between 3643 cases, 2444 of their unaffected sisters and 2877 population controls and conducted separate case-control analyses based on population and sister controls using unconditional multivariable logistic regression. Compared with sister controls, population controls were more highly educated, had an earlier age at menarche, fewer births, their first birth at a later age and their last birth more recently. The established breast cancer associations detected using sister controls, but not detected using population controls, were decreasing risk with each of later age at menarche, more births, younger age at first birth and greater time since last birth. Since participation of population controls might be unintentionally related to some risk factors, we hypothesize that sister controls could provide more valid relative risk estimates and be recruited at lower cost. Given declining study participation by population controls, this contention is highly relevant to epidemiologic research.

Occupational Snake Bites: a Prospective Case Series of Patients Reported to the ToxIC North American Snakebite Registry.

PubMed

Spyres, Meghan B; Ruha, Anne-Michelle; Seifert, Steven; Onisko, Nancy; Padilla-Jones, Angela; Smith, Eric Anthony

2016-12-01

In the developing world, occupation has been identified as a risk factor for snake bite. Such an association has not been described in the USA. The objective of this study was to describe the epidemiology and clinical manifestations of occupational snake bite in patients reported to the ToxIC North American Snakebite Registry (NASBR). This was a prospective case series of patients reported to the ToxIC NASBR between January 1, 2014 and November 5, 2015. Variables collected included snake species, patient demographics, date and location of exposure, occupation, bite location, clinical manifestations, and management. Of 180 adult snake bites reported, 25 (13.9 %; 95 % CI 9.2-19.8 %) were occupational in nature. Rattlesnake envenomations were common (80 %). Most snake bites (96 %) occurred in men. Occupations most associated with snake bite were landscaping (28 %) and working directly with snakes (24 %). Fifty-six percent of bites occurred in an outdoor work environment. Seventy-six percent of envenomations were to the upper extremities. Intentional interaction occurred in 40 % of cases, all of which sustained finger envenomations. No cases presented with apparent acute ethanol intoxication. The majority of occupational snake bites occurred in men working outdoors and were unintentional injuries. Bites involving the upper extremity tended to result from intentional interactions. Acute ethanol intoxication did not appear to be involved with occupational envenomations.

Soya food intake and risk of endometrial cancer among Chinese women in Shanghai: population based case-control study

PubMed Central

Xu, Wang Hong; Zheng, Wei; Xiang, Yong Bing; Ruan, Zhi Xian; Cheng, Jia Rong; Dai, Qi; Gao, Yu Tang; Shu, Xiao Ou

2004-01-01

Objective To evaluate the association of intake of soya food, a rich source of phytoestrogens, with the risk of endometrial cancer. Design Population based case-control study, with detailed information on usual soya food intake over the past five years collected by face to face interview using a food frequency questionnaire. Setting Urban Shanghai, China. Participants 832 incident cases of endometrial cancer in women aged of 30 to 69 years diagnosed during 1997-2001 and identified from the Shanghai Cancer Registry; 846 control women frequency matched to cases on age and randomly selected from the Shanghai Residential Registry. Main outcome measures Odds ratios for risk of endometrial cancer in women with different intakes of soya foods. Results Regular consumption of soya foods, measured as amount of either soya protein or soya isoflavones, was inversely associated with the risk of endometrial cancer. Compared with women with the lowest quarter of intake, the adjusted odds ratio of endometrial cancer was reduced from 0.93 to 0.85 and 0.67 with increasing quarter of soya protein intake (P for trend 0.01). A similar inverse association was observed for soya isoflavones and soya fibre intake. The inverse association seemed to be more pronounced among women with high body mass index and waist:hip ratio. Conclusion Regular intake of soya foods is associated with a reduced risk of endometrial cancer. PMID:15136343

Impact of accelerated progression to AIDS on public health monitoring of late HIV diagnosis.

PubMed

Sabharwal, Charulata J; Sepkowitz, Kent; Mehta, Reshma; Shepard, Colin; Bodach, Sara; Torian, Lucia; Begier, Elizabeth M

2011-03-01

Some patients develop AIDS within a year of HIV infection ("accelerated progression"). Classifying such cases as late HIV diagnosis may lead to inaccurate evaluation of HIV testing efforts. We sought to determine this group's contribution to overall late diagnosis rates. To identify cases of accelerated progression (development of AIDS within 12 months of a negative HIV test), we reviewed published HIV seroconverter cohort studies and used New York City's (NYC) HIV/AIDS surveillance registry. From the literature review, three seroconverter cohort studies revealed that 1.0-3.6% of participants had accelerated progression to AIDS. Applying this frequency estimate to the number of new infections in NYC (4762) for 2006 calculated by the Centers for Diseases Control and Prevention's incidence formula, we estimated that 3.6-13.0% of 1317 NYC HIV cases who are diagnosed with AIDS within 12 months of HIV diagnosis are accelerated progressors, not persons HIV infected for many years who did not test and present with AIDS (i.e., delayed diagnosis). In addition, our analysis of the 2006 NYC surveillance registry confirmed the occurrence of accelerated progression in a population-based setting; 67 accelerated progressors were reported and 9 (13%) could be confirmed through follow-up medical record review. With increased HIV testing initiatives, the irreducible proportion of AIDS cases with accelerated progression must be considered when interpreting late diagnosis data.

A case of triple volvulus

PubMed Central

Basu, I; Phillips, D

2012-01-01

Situs inversus is a rare congenital anomaly that has reportedly been associated with caecal volvulus. We describe a case of partial situs inversus complicated by intestinal obstruction secondary to three simultaneously occurring volvuli of the stomach, caecum and sigmoid colon. To our knowledge, this is the first documented case in the literature of multiple, simultaneously occurring volvuli. PMID:22391352

Verification of Data Accuracy in Japan Congenital Cardiovascular Surgery Database Including Its Postprocedural Complication Reports.

PubMed

Takahashi, Arata; Kumamaru, Hiraku; Tomotaki, Ai; Matsumura, Goki; Fukuchi, Eriko; Hirata, Yasutaka; Murakami, Arata; Hashimoto, Hideki; Ono, Minoru; Miyata, Hiroaki

2018-03-01

Japan Congenital Cardiovascluar Surgical Database (JCCVSD) is a nationwide registry whose data are used for health quality assessment and clinical research in Japan. We evaluated the completeness of case registration and the accuracy of recorded data components including postprocedural mortality and complications in the database via on-site data adjudication. We validated the records from JCCVSD 2010 to 2012 containing congenital cardiovascular surgery data performed in 111 facilities throughout Japan. We randomly chose nine facilities for site visit by the auditor team and conducted on-site data adjudication. We assessed whether the records in JCCVSD matched the data in the source materials. We identified 1,928 cases of eligible surgeries performed at the facilities, of which 1,910 were registered (99.1% completeness), with 6 cases of duplication and 1 inappropriate case registration. Data components including gender, age, and surgery time (hours) were highly accurate with 98% to 100% concordance. Mortality at discharge and at 30 and 90 postoperative days was 100% accurate. Among the five complications studied, reoperation was the most frequently observed, with 16 and 21 cases recorded in the database and source materials, respectively, having a sensitivity of 0.67 and a specificity of 0.99. Validation of JCCVSD database showed high registration completeness and high accuracy especially in the categorical data components. Adjudicated mortality was 100% accurate. While limited in numbers, the recorded cases of postoperative complications all had high specificities but had lower sensitivity (0.67-1.00). Continued activities for data quality improvement and assessment are necessary for optimizing the utility of these registries.

Is there a role for prophylactic colectomy in Lynch syndrome patients with inflammatory bowel disease?

PubMed

McNamara, Kate L; Aronson, Melyssa D; Cohen, Zane

2016-01-01

Lynch syndrome and chronic inflammatory bowel disease are two important risk factors for colorectal cancer. It is unclear whether Lynch syndrome patients with inflammatory bowel disease are at sufficiently increased risk for colorectal cancer to warrant prophylactic colectomy. This study aims to identify all cases of Lynch syndrome and concurrent inflammatory bowel disease in a large familial gastrointestinal cancer registry, define incidence of colorectal cancer, and characterize mismatch repair protein gene mutation status and inflammatory bowel disease-associated colorectal cancer risk factors. We retrospectively identified and collected clinical data for all cases with confirmed diagnoses of Lynch syndrome and inflammatory bowel disease in the Familial Gastrointestinal Cancer Registry at Mount Sinai Hospital in Toronto, Canada. Twelve cases of confirmed Lynch syndrome, and concurrent inflammatory bowel disease were identified. Four cases developed colorectal cancer. An additional five cases had colectomy; one was performed for severe colitis, and four were performed for low-grade dysplasia. None of these surgical specimens contained malignancy or high-grade dysplasia. The presentation of Lynch syndrome with inflammatory bowel disease is uncommon and not well described in the literature. This small but important series of twelve cases is the largest reported to date. In this series, patients with Lynch syndrome and concurrent inflammatory bowel disease do not appear to have sufficiently increased risk for colorectal cancer to recommend prophylactic surgery. Therefore, the decision to surgery should continue to be guided by surgical indications for each disease. Further evaluation of this important area will require multi-institutional input.

Using linked administrative and disease-specific databases to study end-of-life care on a population level.

PubMed

Maetens, Arno; De Schreye, Robrecht; Faes, Kristof; Houttekier, Dirk; Deliens, Luc; Gielen, Birgit; De Gendt, Cindy; Lusyne, Patrick; Annemans, Lieven; Cohen, Joachim

2016-10-18

The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.

[The registry report of Japanese lung transplantation--2009].

PubMed

2010-07-01

To scrutinize the status of lung transplantation in Japan, the Japanese Society of Lung and Heart-Lung Transplantation started to collect and present registry data from 2005. This is the 5th official registry report of Japanese lung transplantation. The data of cadaveric lung transplantation and living-donor lobar transplantation performed by the end of 2008 were registered to the database and analyzed with respect to the number of transplants, recipient survival rates, recipient functional and working status, and cause of death after transplantation. Survival rates were calculated by the Kaplan-Meier method. Fifty-three (30 single and 23 bilateral) cadaveric lung transplantations and 77 living-donor lobar transplantations were performed by the end of 2008. Five-year survival rates of cadaveric single and bilateral lung transplantations were 61.9% and 62.5%, respectively, which were both superior to those in the International Registry (47.1% and 55.0%, respectively). Five-year and 10-year survival rates of living-donor lobar transplantation were excellent at 79.9% and 77.0%, respectively. The functional status of >80% of recipients was restored to Hugh-Jones I or II after transplantation. Infection was the leading cause of death after lung transplantation. The results of Japanese lung transplantation are so far satisfactory although we should note the small number of lung transplant cases in Japan. The Japanese Society of Lung and Heart-Lung Transplantation will continue to present the annual report of Japanese lung transplantation.

Outcomes of Middle Eastern Patients Undergoing Percutaneous Coronary Intervention: The Primary Analysis of the First Jordanian PCI Registry.

PubMed

Alhaddad, Imad A; Tabbalat, Ramzi; Khader, Yousef; Al-Mousa, Eyas; Izraiq, Mahmoud; Nammas, Assem; Jarrah, Mohammad; Saleh, Akram; Hammoudeh, Ayman

2017-01-01

This is a prospective multicenter registry designed to evaluate the incidence of adverse cardiovascular events in Middle Eastern patients undergoing percutaneous coronary interventions (PCI). The registry was also designed to determine the predictors of poor outcomes in such patients. We enrolled 2426 consecutive patients who underwent PCI at 12 tertiary care centers in Jordan between January 2013 and February 2014. A case report form was used to record data prospectively at hospital admission, discharge, and 12 months of follow-up. Mean age was 56 ± 11 years, females comprised 21% of the study patients, 62% had hypertension, 53% were diabetics, and 57% were cigarette smokers. Most patients (77%) underwent PCI for acute coronary syndrome. In-hospital and 1-year mortality rates were 0.78% and 1.94%, respectively. Definite or probable stent thrombosis occurred in 9 patients (0.37%) during hospitalization and in 47 (1.94%) at 1 year. Rates of target vessel repeat PCI and coronary artery bypass graft surgery at 1 year were 3.4% and 0.6%, respectively. The multivariate analysis revealed that cardiogenic shock, congestive heart failure, ST-segment deviation, diabetes, and major bleeding were significantly associated with higher risk of 1-year mortality. In this first large Jordanian registry of Middle Eastern patients undergoing PCI, patients treated were relatively young age population with low in-hospital and 1-year adverse cardiovascular events. Certain clinical features were associated with worse outcomes and may warrant aggressive therapeutic strategies.

Racial differences in enrolment in a cancer genetics registry.

PubMed

Moorman, Patricia G; Skinner, Celette Sugg; Evans, James P; Newman, Beth; Sorenson, James R; Calingaert, Brian; Susswein, Lisa; Crankshaw, T Sydnee; Hoyo, Cathrine; Schildkraut, Joellen M

2004-08-01

Lower enrolment of minorities into research studies has been reported frequently. Most studies have little information about nonparticipants, making it difficult to identify characteristics associated with enrolment and how they might vary by race. Women who had previously participated in a population-based, case-control study of breast cancer in North Carolina were invited to enroll in a cancer genetics registry. Detailed questionnaire data on sociodemographic characteristics and cancer risk factors were available for all women. We compared characteristics of women who agreed to be in the registry with those who were deceased, were unlocatable, or declined enrolment. Unconditional logistic regression analyses were done to identify predictors of enrolment. Enrolment rates were markedly lower among African Americans than Whites (15% and 36%, respectively) due to both lower contact rates (41% versus 63%) and lower enrolment rates among those contacted (37% versus 58%). Logistic regression models suggested that racial differences in enrolment were not due to socioeconomic characteristics or other cancer risk factors; race was the only significant predictor of enrolment in multivariable models (odds ratio 0.41, 95% confidence interval 0.23-0.72). Although all women had previously taken part in a research study, African American women were less likely to enroll in the cancer genetics registry than White women. A possible explanation of these findings is that studies of genetics may present particular concerns for African Americans. Further research is needed to identify attitudes and issues that present barriers to participation among minorities.

Night work and breast cancer in women: a Swedish cohort study

PubMed Central

Åkerstedt, Torbjörn; Knutsson, Anders; Narusyte, Jurgita; Svedberg, Pia; Kecklund, Göran; Alexanderson, Kristina

2015-01-01

Objectives Recent research has suggested a moderate link between night work and breast cancer in women, mainly through case–control studies, but non-significant studies are also common and cohort studies are few. The purpose of the present study was to provide new information from cohort data through investigating the association between the number of years with night work and breast cancer among women. Design Cohort study of individuals exposed to night shift work in relation to incidence of breast cancer in women. Setting Individuals in the Swedish Twin registry, with follow-up in the Swedish Cancer Registry. Participants 13 656 women from the Swedish Twin Registry, with 3404 exposed to night work. Outcome measures Breast cancer from the Swedish Cancer Registry (463 cases) during a follow-up time of 12 years. Results A Cox proportional hazards regression analysis with control for a large number of confounders showed that the HR was HR=1.68 (95% CI 0.98 to 2.88) for the group with >20 years of night work. When the follow-up time was limited to ages below 60 years, those exposed >20 years showed a HR=1.77 (95% CI 1.03 to 3.04). Shorter exposure to night work showed no significant effects. Conclusions The present results, together with previous work, suggest that night work is associated with an increased risk of breast cancer in women, but only after relatively long-term exposure. PMID:25877283

Implementation of a trauma registry in a Brazilian public hospital: the first 1,000 patients.

PubMed

Carreiro, Paulo Roberto Lima; Drumond, Domingos André Fernandes; Starling, Sizenando Vieira; Moritz, Mônica; Ladeira, Roberto Marini

2014-01-01

Show the steps of a Trauma Registry (TR) implementation in a Brazilian public hospital and evaluate the initial data from the database. Descriptive study of the a TR implementation in João XXIII Hospital (Hospital Foundation of the state of Minas Gerais) and analysis of the initial results of the first 1,000 patients. The project was initiated in 2011 and from January 2013 we began collecting data for the TR. In January 2014 the registration of the first 1000 patients was completed. The greatest difficulties in the TR implementation were obtaining funds to finance the project and the lack of information within the medical records. The variables with the lowest completion percentage on the physiological conditions were: pulse, blood pressure, respiratory rate and Glasgow coma scale. Consequently, the Revised Trauma Score (RTS) could be calculated in only 31% of cases and the TRISS methodology applied to 30.3% of patients. The main epidemiological characteristics showed a predominance of young male victims (84.7%) and the importance of aggression as a cause of injuries in our environment (47.5%), surpassing traffic accidents. The average length of stay was 6 days, and mortality 13.7%. Trauma registries are invaluable tools in improving the care of trauma victims. It is necessary to improve the quality of data recorded in medical records. The involvement of public authorities is critical for the successful implementation and maintenance of trauma registries in Brazilian hospitals.

A Global Cancer Surveillance Framework Within Noncommunicable Disease Surveillance: Making the Case for Population-Based Cancer Registries.

PubMed

Piñeros, Marion; Znaor, Ariana; Mery, Les; Bray, Freddie

2017-01-01

The growing burden of cancer among several major noncommunicable diseases (NCDs) requires national implementation of tailored public health surveillance. For many emerging economies where emphasis has traditionally been placed on the surveillance of communicable diseases, it is critical to understand the specificities of NCD surveillance and, within it, of cancer surveillance. We propose a general framework for cancer surveillance that permits monitoring the core components of cancer control. We examine communalities in approaches to the surveillance of other major NCDs as well as communicable diseases, illustrating key differences in the function, coverage, and reporting in each system. Although risk factor surveys and vital statistics registration are the foundation of surveillance of NCDs, population-based cancer registries play a unique fundamental role specific to cancer surveillance, providing indicators of population-based incidence and survival. With an onus now placed on governments to collect these data as part of the monitoring of NCD targets, the integration of cancer registries into existing and future NCD surveillance strategies is a vital requirement in all countries worldwide. The Global Initiative for Cancer Registry Development, endorsed by the World Health Organization, provides a means to enhance cancer surveillance capacity in low- and middle-income countries. © The Author 2017. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Registries in European post-marketing surveillance: a retrospective analysis of centrally approved products, 2005-2013.

PubMed

Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim; De Bruin, Marie L; Arlett, Peter; Kurz, Xavier

2017-12-01

Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. European Public Assessment Reports were consulted to identify products for which a request for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were collected from EMA electronic record keeping systems. Of 392 products that received a positive Committee for Medicinal Products for Human Use opinion during 2005-2013, 31 registries were requested for 30 products in total. Sixty-five percent were product registries whereas 35% were disease registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. The delays found in getting new registries up and running support the need to improve the timeliness of data collection in the post-marketing setting. Methodological challenges met in conducting this study highlighted the need for a clarification of definitions and epidemiological concepts around patient registries. The results will inform the EMA Patient Registry initiative to support use of existing patient registries for the post-authorisation benefit-risk monitoring of medicinal products. © 2017 Commonwealth of Australia. Pharmacoepidemiology & Drug Safety © 2017 John Wiley & Sons, Ltd. © 2017 Commonwealth of Australia. Pharmacoepidemiology & Drug Safety © 2017 John Wiley & Sons, Ltd.

How complete are immunization registries? The Philadelphia story.

PubMed

Kolasa, Maureen S; Chilkatowsky, Andrew P; Clarke, Kevin R; Lutz, James P

2006-01-01

To assess accuracy and completeness of Philadelphia, Pa, registry data among children served by providers in areas at risk for underimmunization. Philadelphia's Department of Public Health selected a simple random sample of 45 children age 19-35 months (or all children age 19-35 months if there were <45 children in the practice) from each of 30 private practices receiving government-funded vaccine and located in zip codes where children are at risk for underimmunization. Chart and registry data were compared with determine the proportion of children missing from the registry and assess differences in immunization coverage. Of 620 children reviewed, 567 (92%) were in the registry. Significant differences (P < .05) were observed in immunization coverage for 4 diphtheria-tetanus-acellular pertussis vaccinations, 3 polio vaccinations, 1 measles-mumps-rubella vaccination, and 3 Haemophilus influenzae type b vaccinations between the chart (80% coverage) and registry (62% coverage). Providers submitting electronic medical records or directly transferring electronic data to the registry had significantly more children in the registry and higher registry-reported immunization coverage than those whose data were entered from billing records or log forms. All practice types experienced difficulties in transferring complete data to the registry. Although 92% of study children were in the registry, immunization coverage was significantly lower when registry data were compared with chart data. Because electronic medical records and direct electronic data transfer resulted in more complete registry data, these methods should be encouraged in linking providers with immunization registries.

Inter-rater reliability of data elements from a prototype of the Paul Coverdell National Acute Stroke Registry

PubMed Central

Reeves, Mathew J; Mullard, Andrew J; Wehner, Susan

2008-01-01

Background The Paul Coverdell National Acute Stroke Registry (PCNASR) is a U.S. based national registry designed to monitor and improve the quality of acute stroke care delivered by hospitals. The registry monitors care through specific performance measures, the accuracy of which depends in part on the reliability of the individual data elements used to construct them. This study describes the inter-rater reliability of data elements collected in Michigan's state-based prototype of the PCNASR. Methods Over a 6-month period, 15 hospitals participating in the Michigan PCNASR prototype submitted data on 2566 acute stroke admissions. Trained hospital staff prospectively identified acute stroke admissions, abstracted chart information, and submitted data to the registry. At each hospital 8 randomly selected cases were re-abstracted by an experienced research nurse. Inter-rater reliability was estimated by the kappa statistic for nominal variables, and intraclass correlation coefficient (ICC) for ordinal and continuous variables. Factors that can negatively impact the kappa statistic (i.e., trait prevalence and rater bias) were also evaluated. Results A total of 104 charts were available for re-abstraction. Excellent reliability (kappa or ICC > 0.75) was observed for many registry variables including age, gender, black race, hemorrhagic stroke, discharge medications, and modified Rankin Score. Agreement was at least moderate (i.e., 0.75 > kappa ≥; 0.40) for ischemic stroke, TIA, white race, non-ambulance arrival, hospital transfer and direct admit. However, several variables had poor reliability (kappa < 0.40) including stroke onset time, stroke team consultation, time of initial brain imaging, and discharge destination. There were marked systematic differences between hospital abstractors and the audit abstractor (i.e., rater bias) for many of the data elements recorded in the emergency department. Conclusion The excellent reliability of many of the data elements supports the use of the PCNASR to monitor and improve care. However, the poor reliability for several variables, particularly time-related events in the emergency department, indicates the need for concerted efforts to improve the quality of data collection. Specific recommendations include improvements to data definitions, abstractor training, and the development of ED-based real-time data collection systems. PMID:18547421

Semantic Integration for Marine Science Interoperability Using Web Technologies

NASA Astrophysics Data System (ADS)

Rueda, C.; Bermudez, L.; Graybeal, J.; Isenor, A. W.

2008-12-01

The Marine Metadata Interoperability Project, MMI (http://marinemetadata.org) promotes the exchange, integration, and use of marine data through enhanced data publishing, discovery, documentation, and accessibility. A key effort is the definition of an Architectural Framework and Operational Concept for Semantic Interoperability (http://marinemetadata.org/sfc), which is complemented with the development of tools that realize critical use cases in semantic interoperability. In this presentation, we describe a set of such Semantic Web tools that allow performing important interoperability tasks, ranging from the creation of controlled vocabularies and the mapping of terms across multiple ontologies, to the online registration, storage, and search services needed to work with the ontologies (http://mmisw.org). This set of services uses Web standards and technologies, including Resource Description Framework (RDF), Web Ontology language (OWL), Web services, and toolkits for Rich Internet Application development. We will describe the following components: MMI Ontology Registry: The MMI Ontology Registry and Repository provides registry and storage services for ontologies. Entries in the registry are associated with projects defined by the registered users. Also, sophisticated search functions, for example according to metadata items and vocabulary terms, are provided. Client applications can submit search requests using the WC3 SPARQL Query Language for RDF. Voc2RDF: This component converts an ASCII comma-delimited set of terms and definitions into an RDF file. Voc2RDF facilitates the creation of controlled vocabularies by using a simple form-based user interface. Created vocabularies and their descriptive metadata can be submitted to the MMI Ontology Registry for versioning and community access. VINE: The Vocabulary Integration Environment component allows the user to map vocabulary terms across multiple ontologies. Various relationships can be established, for example exactMatch, narrowerThan, and subClassOf. VINE can compute inferred mappings based on the given associations. Attributes about each mapping, like comments and a confidence level, can also be included. VINE also supports registering and storing resulting mapping files in the Ontology Registry. The presentation will describe the application of semantic technologies in general, and our planned applications in particular, to solve data management problems in the marine and environmental sciences.

The cost of doing business: cost structure of electronic immunization registries.

PubMed

Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

2002-10-01

To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment.

Review article: Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region?

PubMed

Lim, Teck-Onn; Goh, Adrian; Lim, Yam-Ngo; Morad, Zaki

2008-12-01

We review renal registry data from the Asia-Pacific region with an emphasis on their uses in health care and in dialysis care in particular. The review aims to demonstrate the information value of registry data. While renal registry provides a useful data resource for epidemiological research, there are severe methodological limitations in its application for analytical or therapeutic research. However, it is the use of renal registry data for public health and health-care management purposes that registry really comes into its own, and it is primarily for these that governments have invested in national patient and disease registries. We apply data from several renal registries in the Asia-Pacific region to illustrate its wide application for planning dialysis services, for evaluating dialysis practices and health outcomes, with a view to improving the quality of dialysis care. In the course of preparing the review, we have found that the quality and accessibility of renal registry data were highly variable across the region. Given the value of renal registry, every country in the Asia-Pacific region should establish one or should ensure that their current registries are better resourced and developed. Greater data sharing and collaboration among registries in the region could help advance the nephrology to serve our patients better.

Kaiser Permanente implant registries benefit patient safety, quality improvement, cost-effectiveness.

PubMed

Paxton, Elizabeth W; Kiley, Mary-Lou; Love, Rebecca; Barber, Thomas C; Funahashi, Tadashi T; Inacio, Maria C S

2013-06-01

In response to the increased volume, risk, and cost of medical devices, in 2001 Kaiser Permanente (KP) developed implant registries to enhance patient safety and quality, and to evaluate cost-effectiveness. Using an integrated electronic health record system, administrative databases, and other institutional databases, orthopedic, cardiology, and vascular implant registries were developed in 2001, 2006, and 2011, respectively. These registries monitor patients, implants, clinical practices, and surgical outcomes for KP's 9 million members. Critical to registry success is surgeon leadership and engagement; each geographical region has a surgeon champion who provides feedback on registry initiatives and disseminates registry findings. The registries enhance patient safety by providing a variety of clinical decision tools such as risk calculators, quality reports, risk-adjusted medical center reports, summaries of surgeon data, and infection control reports to registry stakeholders. The registries are used to immediately identify patients with recalled devices, evaluate new and established device technology, and identify outlier implants. The registries contribute to cost-effectiveness initiatives through collaboration with sourcing and contracting groups and confirming adherence to device formulary guidelines. Research studies based on registry data have directly influenced clinical best practices. Registries are important tools to evaluate longitudinal device performance and safety, study the clinical indications for and outcomes of device implantation, respond promptly to recalls and advisories, and contribute to the overall high quality of care of our patients.

Spatial Relative Risk Patterns of Autism Spectrum Disorders in Utah

ERIC Educational Resources Information Center

Bakian, Amanda V.; Bilder, Deborah A.; Coon, Hilary; McMahon, William M.

2015-01-01

Heightened areas of spatial relative risk for autism spectrum disorders (ASD), or ASD hotspots, in Utah were identified using adaptive kernel density functions. Children ages four, six, and eight with ASD from multiple birth cohorts were identified by the Utah Registry of Autism and Developmental Disabilities. Each ASD case was gender-matched to…

Causes and Outcomes of Pediatric Injuries Occurring at School.

ERIC Educational Resources Information Center

Di Scala, Carla; Gallagher, Susan Scavo; Schneps, Sue E.

1997-01-01

Used the National Pediatric Trauma Registry, which collects data on child injuries requiring hospitalization, to examine causes and outcomes of injuries occurring at school. Analysis of 1,558 cases indicated that most injuries were unintentional and occurred among students age 10-14 years. Nearly half occurred in recreational areas. Falls and…

40 CFR 704.95 - Phosphonic acid, [1,2-ethanediyl-bis[nitrilobis-(methylene)

Code of Federal Regulations, 2010 CFR

2010-07-01

... of the substance for which the report is submitted. (ii) Company name and headquarters address. (iii... transaction; the import site may in some cases be the organization's headquarters office in the United States... Abstracts Service Registry Number of the substance for which the report is submitted. (ii) Company name and...

Childhood CT scans and cancer risk: impact of predisposing factors for cancer on the risk estimates.

PubMed

Journy, N; Roué, T; Cardis, E; Le Pointe, H Ducou; Brisse, H; Chateil, J-F; Laurier, D; Bernier, M-O

2016-03-01

To investigate the role of cancer predisposing factors (PFs) on the associations between paediatric computed tomography (CT) scan exposures and subsequent risk of central nervous system (CNS) tumours and leukaemia. A cohort of children who underwent a CT scan in 2000-2010 in 23 French radiology departments was linked with the national childhood cancers registry and national vital status registry; information on PFs was retrieved through hospital discharge databases. In children without PF, hazard ratios of 1.07 (95% CI 0.99-1.10) for CNS tumours (15 cases) and 1.16 (95% CI 0.77-1.27) for leukaemia (12 cases) were estimated for each 10 mGy increment in CT x-rays organ doses. These estimates were similar to those obtained in the whole cohort. In children with PFs, no positive dose-risk association was observed, possibly related to earlier non-cancer mortality in this group. Our results suggest a modifying effect of PFs on CT-related cancer risks, but need to be confirmed by longer follow-up and other studies.

Robotic-assisted Laparoscopic Repair of Scrotal Inguinal Hernias.

PubMed

Yheulon, Christopher G; Maxwell, Daniel W; Balla, Fadi M; Patel, Ankit D; Lin, Edward; Stetler, Jamil L; Davis, Steven S

2018-06-01

Scrotal inguinal hernias represent a challenging surgical pathology. Although some advanced laparoscopists can repair these hernias through a minimally invasive approach, open repair is considered the technique of choice for most surgeons. The purpose of this study is to show our results of robotic-assisted laparoscopic repair of scrotal inguinal hernias. We reviewed the charts of 14 patients with inguinoscrotal hernias who underwent robotic-assisted transabdominal preperitoneal (TAPP) hernia repair. Mean follow-up was 7 months. The European Registry for Abdominal Wall Hernia Quality of Life score, a 90-point scale, was utilized to quantify patient reported outcomes. Robotic TAPP repair was successful in all 14 patients. Average case duration was 100 minutes (78 to 140 min) for unilateral hernias and 208 minutes (166 to 238 min) for bilateral hernias. Trainees were involved in 93% (13/14) of cases. There were no recurrences. Three patients developed postoperative seromas. The mean European Registry for Abdominal Wall Hernia Quality of Life score was 3.7 (0 to 10). Scrotal hernias can be safely repaired using robotic-assisted TAPP methods with low morbidity and favorable patient reported outcomes.

Data quality at the Singapore Cancer Registry: An overview of comparability, completeness, validity and timeliness.

PubMed

Fung, Janice Wing Mei; Lim, Sandra Bee Lay; Zheng, Huili; Ho, William Ying Tat; Lee, Bee Guat; Chow, Khuan Yew; Lee, Hin Peng

2016-08-01

To provide a comprehensive evaluation of the quality of the data at the Singapore Cancer Registry (SCR). Quantitative and semi-quantitative methods were used to assess the comparability, completeness, accuracy and timeliness of data for the period of 1968-2013, with focus on the period 2008-2012. The SCR coding and classification systems follow international standards. The overall completeness was estimated at 98.1% using the flow method and 97.5% using the capture-recapture method, for the period of 2008-2012. For the same period, 91.9% of the cases were morphologically verified (site-specific range: 40.4-100%) with 1.1% DCO cases. The under-reporting in 2011 and 2012 due to timely publication was estimated at 0.03% and 0.51% respectively. This review shows that the processes in place at the SCR yields data which are internationally comparable, relatively complete, valid, and timely, allowing for greater confidence in the use of quality data in the areas of cancer prevention, treatment and control. Copyright © 2016 Elsevier Ltd. All rights reserved.

Disparities of Cancer Incidence in Michigan’s American Indians: Spotlight on Breast Cancer

PubMed Central

Roen, Emily L.; Copeland, Glenn E.; Pinagtore, Noel L.; Meza, Rafael; Soliman, Amr S.

2014-01-01

Introduction In American Indians (AI), cancer is a leading cause of mortality, yet their disease burden is not fully understood due to unaddressed racial misclassification in cancer registries. This study describes cancer trends among AIs in Michigan, focusing on breast cancer, in a linked data set of Indian Health Service (IHS), tribal and state cancer registry data adjusted for misclassification. Methods AI status was based upon reported race and linkage to IHS data and tribal registries. Data with complete linkage on all incident cancer cases in Michigan from 1995-2004 was used to calculate age-standardized incidence estimates for invasive all-site and female breast cancers stratified by racial group. For female breast cancers, stage and age-specific incidence and percent distributions of early versus late-stage cancers and age of diagnosis were calculated. Results Over 50% of all AI cases were identified through IHS and/or tribal linkage. In the linked data, AIs had the lowest rates of all-sites and breast cancer. For breast cancers, AI women had a greater late-stage cancer burden and a younger mean age of diagnosis as compared to whites. Although the age-specific rate for whites was greater than for AI women in nearly all age groups, the difference in hazard ratio increased with increasing age. Conclusions Our state-specific information will help formulate effective, tailored cancer prevention strategies to this population in Michigan. The data linkages used in our study are crucial for generating accurate rates and can be effective in addressing misclassification of the AI population and formulating cancer prevention strategies for AI nationwide. PMID:24676851

Clinical patterns and outcome in epithelioid hemangioendothelioma with or without pulmonary involvement: insights from an internet registry in the study of a rare cancer.

PubMed

Lau, Kenneth; Massad, Malek; Pollak, Cynthia; Rubin, Charles; Yeh, Joannie; Wang, Jing; Edelman, Guy; Yeh, Jenny; Prasad, Sunil; Weinberg, Guy

2011-11-01

Epithelioid hemangioendothelioma (EHE) is a rare vascular neoplasm of endothelial origin with clinical behavior intermediate between hemangioma and angiosarcoma. The natural history of EHE is highly variable. This study uses an Internet registry to identify clinical patterns with prognostic significance in EHE. Cases from the International Hemangioendothioma, Epithelioid Hemangioendothelioma, and Related Vascular Disorders (HEARD) Support Group were evaluated based on demographics, organ involvement, disease progression, presence or absence of pleural effusion, and treatment. Survival among various cohorts was compared using log-rank analysis of Kaplan-Meier plots. Two hundred sixty-four patients were identified from April 2004 to November 2009. Fifty-eight cases were excluded because of inadequate information or wrong diagnosis. EHE was more common in female patients (61%). Male gender and age ≥ 55 years were associated with decreased survival. The most commonly affected organs were liver, lung, and bone. No specific organ or combination of organ involvement differentially affected survival, and survival was no different between patients with multiple vs single organ involvement. However, pattern B, defined as lesions without distinct borders (eg, pulmonary infiltrates, pleural effusion, ascites), hemoptysis, or involvement of more than two bones adversely affected survival in all cohorts. A novel staging system with prognostic value for EHE is proposed. Pleural effusion or other signs of uncontained tumor growth, hemoptysis, and osseous involvement of more than two bones implied worse survival than did localized and discrete tumors, regardless of number of organs involved. A lay registry can provide useful insights into the clinical behavior of a rare cancer.

Rates, management, and outcome of rivaroxaban bleeding in daily care: results from the Dresden NOAC registry

PubMed Central

Förster, Kati; Pannach, Sven; Ebertz, Franziska; Gelbricht, Vera; Thieme, Christoph; Michalski, Franziska; Köhler, Christina; Werth, Sebastian; Sahin, Kurtulus; Tittl, Luise; Hänsel, Ulrike; Weiss, Norbert

2014-01-01

Worldwide, rivaroxaban is increasingly used for stroke prevention in atrial fibrillation and treatment of venous thromboembolism, but little is known about rivaroxaban-related bleeding complications in daily care. Using data from a prospective, noninterventional oral anticoagulation registry of daily care patients (Dresden NOAC registry), we analyzed rates, management, and outcome of rivaroxaban-related bleeding. Between October 1, 2011, and December 31, 2013, 1776 rivaroxaban patients were enrolled. So far, 762 patients (42.9%) reported 1082 bleeding events during/within 3 days after last intake of rivaroxaban (58.9% minor, 35.0% of nonmajor clinically relevant, and 6.1% major bleeding according to International Society on Thrombosis and Haemostasis definition). In case of major bleeding, surgical or interventional treatment was needed in 37.8% and prothrombin complex concentrate in 9.1%. In the time-to-first-event analysis, 100-patient-year rates of major bleeding were 3.1 (95% confidence interval 2.2-4.3) for stroke prevention in atrial fibrillation and 4.1 (95% confidence interval 2.5-6.4) for venous thromboembolism patients, respectively. In the as-treated analysis, case fatality rates of bleeding leading to hospitalizations were 5.1% and 6.3% at days 30 and 90 after bleeding, respectively. Our data indicate that, in real life, rates of rivaroxaban-related major bleeding may be lower and that the outcome may at least not be worse than that of major vitamin K antagonist bleeding, and probably better. This trial was registered at www.clinicaltrials.gov as identifier #NCT01588119. PMID:24859362

Characteristics and temporal trends in patient registries: focus on the life sciences industry, 1981–2012

PubMed Central

Travers, Karin; Sallum, Rachel H; Burns, Meghan D; Barr, Charles E; Beattie, Mary S; Pashos, Chris L; Luce, Bryan R

2015-01-01

Purpose Patient registries are used to monitor safety, examine real-world effectiveness, and may potentially contribute to comparative effectiveness research. To our knowledge, life sciences industry (LSI)-sponsored registries have not been systematically categorized. This study represents a first step toward understanding such registries over time. Methods Studies described as registries were identified in the ClinicalTrials.gov database. Characteristics from these registry records were abstracted and analyzed. Results Of 1202 registries identified, approximately 47% reported LSI sponsorship. These 562 LSI registries varied in focus: medical devices (n = 193, 34%), specific drugs (n = 173, 31%), procedures (n = 29, 5%), or particular diseases (n = 139, 25%). Thirty-three registries (<6%) evaluated pregnancy outcomes. The most common therapeutic area was cardiovascular (n = 234, 42%); others included endocrinology, immunology, oncology, musculoskeletal disorders, and neurology. The two most often measured outcomes were clinical effectiveness and safety, each of which appeared in 363/562 (65%) of LSI registries. Other outcomes included real-world clinical practice patterns (n = 122, 22%), patient-reported outcomes (n = 106, 19%), disease epidemiology/natural history (n = 69, 12%), and economic outcomes (n = 30, 5%). The number of LSI registries and their geographic diversity has increased over time. Conclusions The LSI registries represent a substantial proportion of all patient registries documented in ClinicalTrials.gov. These prospective studies are growing in number and encompass diverse therapeutic areas and geographic regions. Most registries measure multiple outcomes and capture real-world data that may be unavailable through other study designs. This classification of LSI registries documents their use for studying heterogeneity of diseases, examining treatment patterns, measuring patient-reported outcomes, examining economic outcomes, and performing comparative effectiveness research. © 2014 The Authors. Pharmacoepidemiology and Drug Safety published by John Wiley & Sons, Ltd. PMID:25079108

Sample size of the reference sample in a case-augmented study.

PubMed

Ghosh, Palash; Dewanji, Anup

2017-05-01

The case-augmented study, in which a case sample is augmented with a reference (random) sample from the source population with only covariates information known, is becoming popular in different areas of applied science such as pharmacovigilance, ecology, and econometrics. In general, the case sample is available from some source (for example, hospital database, case registry, etc.); however, the reference sample is required to be drawn from the corresponding source population. The required minimum size of the reference sample is an important issue in this regard. In this work, we address the minimum sample size calculation and discuss related issues. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.

Three years of experience: the Italian registry and safety data update.

PubMed

Mancardi, G L; Tedeschi, G; Amato, M P; D'Alessandro, R; Drago, F; Milanese, C; Popoli, P; Rossi, P; Savettieri, G; Tola, M R; Comi, G; Pozzilli, C; Bertolotto, A; Marrosu, M G; Grimaldi, L M E; Laroni, A; Vanacore, N; Covezzoli, A; De Rosa, M; Piccinni, C; Montanaro, N; Periotto, L; Iommelli, R; Tomino, C; Provinciali, L

2011-01-01

At the end of 2006, a pharmacovigilance program on natalizumab was settled by the Italian Pharmaceutical Agency, and on January 2007, multiple sclerosis patients poorly responding to the immunomodulating therapies or with an aggressive clinical form of disease from onset initiated to be registered and to receive the medication. On February 2010, almost 3,000 cases have been treated with natalizumab. The drop-out rate is 10%. Almost 800 cases received cycles of natalizumab for more than 18 months. One case of PML was reported and other adverse events are similar to those described in phase III studies. The majority of cases remained stable, while in 25% of cases, an improvement of disability was documented.

Chapter 8: Web-based Tools - CARNIVORE

NASA Astrophysics Data System (ADS)

Graham, M. J.

Registries are an integral part of the VO infrastructure, yet the greatest exposure that most users will ever need to have to one is discovering resources through a registry portal. Some users, however, will have resources of their own that they need to register and will go to an existing registry to do so, but a small number will want to set up their own registry. They may have too many resources to register with an existing registry; they may want more control over their resource metadata than an existing registry will afford; or they may want to set up a specialized registry, e.g. a subjectspecific one. CARNIVORE is designed to offer those who want their own registry the functionality they require in an off-the-shelf implementation. This chapter describes how to set up your own registry using CARNIVORE.

ClinicalTrials.gov, stem cells and 'pay-to-participate' clinical studies.

PubMed

Turner, Leigh

2017-09-01

Numerous US businesses that engage in direct-to-consumer advertising of stem cell interventions that are not US FDA-approved also recruit clients by listing 'pay-to-participate' studies listed on ClinicalTrials.gov . Individuals considering enrolling in such studies and NIH officials responsible for overseeing the database need to be aware that some businesses are using the registry to promote unapproved stem cell interventions that study subjects are charged to receive. Inclusion of such studies in ClinicalTrials.gov reveals that the database needs better screening tools. In particular, screening should evaluate whether studies submitted to the registry have been reviewed and permitted to proceed by the FDA in the case of clinical studies requiring FDA clearance in addition to institutional review board approval.

Current trends and outcomes of breast reconstruction following nipple-sparing mastectomy: results from a national multicentric registry with 1006 cases over a 6-year period.

PubMed

Casella, Donato; Calabrese, Claudio; Orzalesi, Lorenzo; Gaggelli, Ilaria; Cecconi, Lorenzo; Santi, Caterina; Murgo, Roberto; Rinaldi, Stefano; Regolo, Lea; Amanti, Claudio; Roncella, Manuela; Serra, Margherita; Meneghini, Graziano; Bortolini, Massimiliano; Altomare, Vittorio; Cabula, Carlo; Catalano, Francesca; Cirilli, Alfredo; Caruso, Francesco; Lazzaretti, Maria Grazia; Meattini, Icro; Livi, Lorenzo; Cataliotti, Luigi; Bernini, Marco

2017-05-01

Reconstruction options following nipple-sparing mastectomy (NSM) are diverse and not yet investigated with level IA evidence. The analysis of surgical and oncological outcomes of NSM from the Italian National Registry shows its safety and wide acceptance both for prophylactic and therapeutic cases. A further in-depth analysis of the reconstructive approaches with their trend over time and their failures is the aim of this study. Data extraction from the National Database was performed restricting cases to the 2009-2014 period. Different reconstruction procedures were analyzed in terms of their distribution over time and with respect to specific indications. A 1-year minimum follow-up was conducted to assess reconstructive unsuccessful events. Univariate and multivariate analyses were performed to investigate the causes of both prosthetic and autologous failures. 913 patients, for a total of 1006 procedures, are included in the analysis. A prosthetic only reconstruction is accomplished in 92.2 % of cases, while pure autologous tissues are employed in 4.2 % and a hybrid (prosthetic plus autologous) in 3.6 %. Direct-to-implant (DTI) reaches 48.7 % of all reconstructions in the year 2014. Prophylactic NSMs have a DTI reconstruction in 35.6 % of cases and an autologous tissue flap in 12.9 % of cases. Failures are 2.7 % overall: 0 % in pure autologous flaps and 9.1 % in hybrid cases. Significant risk factors for failures are diabetes and the previous radiation therapy on the operated breast. Reconstruction following NSM is mostly prosthetic in Italy, with DTI gaining large acceptance over time. Failures are low and occurring in diabetic and irradiated patients at the multivariate analysis.

Increased cancer risk in patients with periodontitis.

PubMed

Dizdar, Omer; Hayran, Mutlu; Guven, Deniz Can; Yılmaz, Tolga Birtan; Taheri, Sahand; Akman, Abdullah C; Bilgin, Emre; Hüseyin, Beril; Berker, Ezel

2017-12-01

Previous studies have noted a possible association between periodontal diseases and the risk of various cancers. We assessed cancer risk in a cohort of patients with moderate to severe periodontitis. Patients diagnosed with moderate to severe periodontitis by a periodontist between 2001 and 2010 were identified from the hospital registry. Patients younger than 35 years of age or with a prior cancer diagnosis were excluded. The age- and gender-standardized incidence rates (SIR) were calculated by dividing the number of observed cases by the number of expected cases from Turkish National Cancer Registry 2013 data. A total of 280 patients were included (median age 49.6, 54% female). Median follow-up was 12 years. Twenty-five new cancer cases were observed. Patients with periodontitis had 77% increased risk of cancer (SIR 1.77, 95% CI 1.17-2.58, p = .004). Women with periodontitis had significantly higher risk of breast cancer (SIR 2.40, 95% CI 0.88-5.33) and men with periodontitis had significantly higher risk of prostate cancer (SIR 3.75, 95% CI 0.95-10.21) and hematological cancers (SIR 6.97, 95% CI 1.77-18.98). Although showing a causal association necessitates further investigation, our results support the idea that periodontitis might be associated with increased cancer risk, particularly with hematological, breast and prostate cancers.

Cancer incidence and mortality projections up to 2020 in Catalonia by means of Bayesian models.

PubMed

Ribes, J; Esteban, L; Clèries, R; Galceran, J; Marcos-Gragera, R; Gispert, R; Ameijide, A; Vilardell, M L; Borras, J; Puigdefabregas, A; Buxó, M; Freitas, A; Izquierdo, A; Borras, J M

2014-08-01

To predict the burden of cancer in Catalonia by 2020 assessing changes in demography and cancer risk during 2010-2020. Data were obtained from Tarragona and Girona cancer registries and Catalan mortality registry. Population age distribution was obtained from the Catalan Institute of Statistics. Predicted cases in Catalonia were estimated through autoregressive Bayesian age-period-cohort models. There will be diagnosed 26,455 incident cases among men and 18,345 among women during 2020, which means an increase of 22.5 and 24.5 % comparing with the cancer incidence figures of 2010. In men, the increase of cases (22.5 %) can be partitioned in three components: 12 % due to ageing, 8 % due to increase in population size and 2 % due to cancer risk. In women, the role of each component was 9, 8 and 8 %, respectively. The increased risk is mainly expected to be observed in tobacco-related tumours among women and in colorectal and liver cancers among men. During 2010-2020 a mortality decline is expected in both sexes. The expected increase of cancer incidence, mainly due to tobacco-related tumours in women and colorectal in men, reinforces the need to strengthen smoking prevention and the expansion of early detection of colorectal cancer in Catalonia.

Retinoblastoma incidence and survival in European children (1978-1997). Report from the Automated Childhood Cancer Information System project.

PubMed

MacCarthy, A; Draper, G J; Steliarova-Foucher, Eva; Kingston, J E

2006-09-01

Based on 2283 cases of retinoblastoma diagnosed in children aged 0-14 years, incidence and survival in Europe during the period 1978-1997 are described. Data were provided to the Automated Childhood Cancer Information System (ACCIS) from 60 paediatric and general cancer registries. During 1988-1997, the cumulative incidence of retinoblastoma in the ACCIS regions was found to be between 44.2 and 67.9 per million births. The highest incidence was seen in the first year of life. The age-standardised (World standard) incidence rate for the age-range 0-14 years was 4.1 per million. Approximately one-third of cases had bilateral tumours. Overall incidence increased over the period 1978-1997 by 1% per year, as derived from a model adjusted for sex, age group and type of registry (general or paediatric). The 5-year survival rate improved from 89% to 95% during the period covered by the study. This improvement was seen in both unilateral and bilateral cases but was significant only for the unilateral tumours. Survival was lower in the East region, although smaller differences were also observed between the other four regions (British Isles, North, South and West). Availability and quality of registration data on retinoblastoma need to be improved for effective evaluation of incidence and survival.

Myocardial infarction risk and psychosocial work environment: an analysis of the male Swedish working force.

PubMed

Alfredsson, L; Karasek, R; Theorell, T

1982-01-01

The project was designed to test the assumption that certain psychosocial characteristics of occupational groups are associated with elevated myocardial infarction risk. All cases of myocardial infarction below the age of 65 in men living in the region of greater Stockholm during the years 1974-1976 were identified (deaths as well as survivals) in the official registries of hospitalizations and deaths. For each case two controls without infarction (in younger ages four) matched for age, area of residence and sex were selected randomly from the parish registries. For each case and control (n = 334 and 882, respectively) information was available regarding occupation. The psychosocial characteristics of each one of the 118 occupations were recorded by means of a nation wide interview survey (3876 working men) in 1977. Relative age-adjusted risks of developing a myocardial infarction were calculated for occupations in which many vs occupations in which few subjects reported a given characteristic (50% with most vs 50% with least). Shift work and monotony were associated with significant excess risk. Hectic work was not associated with excess risk by itself but in combination with variables associated with low decision latitude and/or few possibilities for growth it was associated with significant excess risk.

Epidemiological changes in AIDS and HIV infection in Italy.

PubMed

Suligoi, Barbara; Pezzotti, Patrizio; Boros, Stefano; Urciuoli, Roberta; Rezza, Giovanni

2003-01-01

This article describes the major changes in the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/ AIDS) epidemic in Italy, using data from the National AIDS Registry and from 5 local surveillance systems for new HIV diagnoses. From 1982 to 2001, 49,063 adults with AIDS were reported to the AIDS Registry. From 1988 to 2000, the 5 local systems reported 23,252 new HIV diagnoses. The AIDS incidence increased until 1995, followed by a progressive decrease. A decrease was also observed for the incidence of new HIV diagnoses after 1989, with an apparent stabilization after 1998. Most AIDS cases have been represented by intravenous drug users (IDU), yet since 1999 the percentage of cases attributable to sexual transmission has exceeded that for IDUs. Similarly, among new HIV diagnoses, the percentage of cases attributable to sexual transmission increased from 23.6% before 1993 to 58.5% in 2000. The percentage of people with AIDS who discovered their seropositivity no earlier than 6 months before AIDS diagnosis increased from 20.6% in 1996 to 48.8% in 2001. Although the incidence of both AIDS and new HIV diagnoses has declined, a possible resurgence of the epidemic cannot be ruled out, in light of various factors that could lead to an increasing number of living infected people.

Tumor size and stage of breast cancer in Côte d'Ivoire and Republic of Congo - Results from population-based cancer registries.

PubMed

Islami, Farhad; Lortet-Tieulent, Joannie; Okello, Catherine; Adoubi, Innocent; Mbalawa, Charles Gombé; Ward, Elizabeth M; Parkin, D Maxwell; Jemal, Ahmedin

2015-12-01

Breast cancer is now the leading female cancer in sub-Saharan Africa, but there is relatively little information on breast cancer characteristics from this region. We studied, on a population basis, the size and stage of female breast cancer at diagnosis in Côte d'Ivoire and Republic of Congo. Data on tumor size and stage of breast cancer at diagnosis were collected by population-based cancer registries in Abidjan (the capital of Côte d'Ivoire; 141 cases) and Brazzaville (the capital of Republic of Congo; 139 cases) from a random group of female breast cancer cases that were diagnosed in 2008-2009 using the same protocol. The majority of breast cancers in both countries were advanced cancers. In Côte d'Ivoire, 68% of tumors were ≥5 cm in diameter and 74% of cancers were stage III or IV at diagnosis; the corresponding proportions in Republic of Congo were 63% and 81%. These results underscore the importance of increased awareness about early detection of breast cancer, as well as expansion of the capacity to provide appropriate diagnosis, treatment, and palliative care in sub-Saharan Africa. Copyright © 2015 Elsevier Ltd. All rights reserved.

International incidence of childhood cancer, 2001-10: a population-based registry study.

PubMed

Steliarova-Foucher, Eva; Colombet, Murielle; Ries, Lynn A G; Moreno, Florencia; Dolya, Anastasia; Bray, Freddie; Hesseling, Peter; Shin, Hee Young; Stiller, Charles A

2017-06-01

Cancer is a major cause of death in children worldwide, and the recorded incidence tends to increase with time. Internationally comparable data on childhood cancer incidence in the past two decades are scarce. This study aimed to provide internationally comparable local data on the incidence of childhood cancer to promote research of causes and implementation of childhood cancer control. This population-based registry study, devised by the International Agency for Research on Cancer in collaboration with the International Association of Cancer Registries, collected data on all malignancies and non-malignant neoplasms of the CNS diagnosed before age 20 years in populations covered by high-quality cancer registries with complete data for 2001-10. Incidence rates per million person-years for the 0-14 years and 0-19 years age groups were age-adjusted using the world standard population to provide age-standardised incidence rates (WSRs), using the age-specific incidence rates (ASR) for individual age groups (0-4 years, 5-9 years, 10-14 years, and 15-19 years). All rates were reported for 19 geographical areas or ethnicities by sex, age group, and cancer type. The regional WSRs for children aged 0-14 years were compared with comparable data obtained in the 1980s. Of 532 invited cancer registries, 153 registries from 62 countries, departments, and territories met quality standards, and contributed data for the entire decade of 2001-10. 385 509 incident cases in children aged 0-19 years occurring in 2·64 billion person-years were included. The overall WSR was 140·6 per million person-years in children aged 0-14 years (based on 284 649 cases), and the most common cancers were leukaemia (WSR 46·4), followed by CNS tumours (WSR 28·2), and lymphomas (WSR 15·2). In children aged 15-19 years (based on 100 860 cases), the ASR was 185·3 per million person-years, the most common being lymphomas (ASR 41·8) and the group of epithelial tumours and melanoma (ASR 39·5). Incidence varied considerably between and within the described regions, and by cancer type, sex, age, and racial and ethnic group. Since the 1980s, the global WSR of registered cancers in children aged 0-14 years has increased from 124·0 (95% CI 123·3-124·7) to 140·6 (140·1-141·1) per million person-years. This unique global source of childhood cancer incidence will be used for aetiological research and to inform public health policy, potentially contributing towards attaining several targets of the Sustainable Development Goals. The observed geographical, racial and ethnic, age, sex, and temporal variations require constant monitoring and research. International Agency for Research on Cancer and the Union for International Cancer Control. Copyright © 2017 World Health Organization; licensee Elsevier. This is an Open Access article published under the CC BY-NC-ND 3.0 IGO license which permits users to download and share the article for non-commercial purposes, so long as the article is reproduced in the whole without changes, and provided the original source is properly cited. This article shall not be used or reproduced in association with the promotion of commercial products, services or any entity. There should be no suggestion that WHO endorses any specific organisation, products, or services. The use of the WHO logo is not permitted. This notice should be preserved along with the article's original URL.

Rare disease registries: a call to action.

PubMed

Lacaze, Paul; Millis, Nicole; Fookes, Megan; Zurynski, Yvonne; Jaffe, Adam; Bellgard, Matthew; Winship, Ingrid; McNeil, John; Bittles, Alan H

2017-09-01

When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This 'umbrella' organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD. © 2017 Royal Australasian College of Physicians.

Prevalence of human papillomavirus types in invasive vulvar cancers and vulvar intraepithelial neoplasia 3 in the United States before vaccine introduction.

PubMed

Gargano, Julia W; Wilkinson, Edward J; Unger, Elizabeth R; Steinau, Martin; Watson, Meg; Huang, Youjie; Copeland, Glenn; Cozen, Wendy; Goodman, Marc T; Hopenhayn, Claudia; Lynch, Charles F; Hernandez, Brenda Y; Peters, Edward S; Saber, Maria Sibug; Lyu, Christopher W; Sands, Lauren A; Saraiya, Mona

2012-10-01

The study aimed to determine the baseline prevalence of human papillomavirus (HPV) types in invasive vulvar cancer (IVC) and vulvar intraepithelial neoplasia 3 (VIN 3) cases using data from 7 US cancer registries. Registries identified eligible cases diagnosed in 1994 to 2005 and requested pathology laboratories to prepare 1 representative block for HPV testing on those selected. Hematoxylin-eosin-stained sections preceding and following those used for extraction were reviewed to confirm representation. Human papillomavirus was detected using L1 consensus polymerase chain reaction (PCR) with PGMY9/11 primers and type-specific hybridization, with retesting of samples with negative and inadequate results with SPF10 primers. For IVC, the confirmatory hematoxylin-eosin slides were re-evaluated to determine histological type. Descriptive analyses were performed to examine distributions of HPV by histology and other factors. Human papillomavirus was detected in 121/176 (68.8%) cases of IVC and 66/68 (97.1%) cases of VIN 3 (p < .0001). Patients with IVC and VIN 3 differed by median age (70 vs 55 y, p = .003). Human papillomavirus 16 was present in 48.6% of IVC cases and 80.9% of VIN 3 cases; other high-risk HPV was present in 19.2% of IVC cases and 13.2% of VIN 3 cases. Prevalence of HPV differed by squamous cell carcinoma histological subtype (p < .0001) as follows: keratinizing, 49.1% (n = 55); nonkeratinizing, 85.7% (n = 14), basaloid, 92.3% (n = 14), warty 78.2% (n = 55), and mixed warty/basaloid, 100% (n = 7). Nearly all cases of VIN 3 and two thirds of IVC cases were positive for high-risk HPV. Prevalence of HPV ranged from 49.1% to 100% across squamous cell carcinoma histological subtypes. Given the high prevalence of HPV in IVC and VIN 3 cases, prophylactic vaccines have the potential to decrease the incidence of vulvar neoplasia.

Simultaneous weak measurement of angular and spatial Goos-Hänchen and Imbert-Fedorov shifts

NASA Astrophysics Data System (ADS)

Prajapati, Chandravati; Viswanathan, Nirmal K.

2017-10-01

We propose and demonstrate the weak measurement scheme to simultaneously measure the amplified angular and spatial contributions to the Goos-Hänchen (GH) and Imbert-Fedorov (IF) shifts, due to transmission through a glass plate. We have studied two cases of post-selection using a polarizer in the first case and a quarter-wave plate (QWP)-polarizer combination in the second case. The two cases are analyzed theoretically using Jones calculus of polarization formalism and the results are verified experimentally. In the first case of post-selection, the projection of the polarizer at +/- {{Δ }} away from the crossed position amplifies the angular GH and IF shifts, while in the second case of post-selection, the projection of QWP at +/- {{Δ }} and polarizer kept fixed measures the polarization ellipticity in the beam and thus amplifies the spatial shift along with the angular shift simultaneously, for {{Δ }}\\ll 1.

Second generation registry framework.

PubMed

Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

2014-01-01

Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that enables the user-driven dynamic creation of patient registries. We believe this second generation RDRF is a novel approach to patient registry design, implementation and deployment and a significant advance on existing registry systems.

Second generation registry framework

PubMed Central

2014-01-01

Background Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. Results This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. Conclusions We introduce the second generation RDRF that enables the user-driven dynamic creation of patient registries. We believe this second generation RDRF is a novel approach to patient registry design, implementation and deployment and a significant advance on existing registry systems. PMID:24982690

Long-term incidence trends of HPV-related cancers, and cases preventable by HPV vaccination: a registry-based study in Norway

PubMed Central

Campbell, Suzanne; Nygård, Mari

2018-01-01

Objectives Examine long-term incidence trends of human papillomavirus (HPV)-related cancer in Norway, and estimate the number of cancer cases preventable by vaccines against HPV 16/18 or HPV 16/18/31/33/45/52/58. Design Observational registry-based study. We extracted incident cases of HPV-related cancer during 1953–2015 from the Cancer Registry of Norway. Tumour HPV prevalence estimates from large international meta-analyses or from Norway were used to estimate the protective potential of HPV vaccines. Participants and setting The Norwegian population. Primary outcome measures Incidence trend analyses during 1953–2015 for squamous cell carcinoma (SCC) of the cervix, vulva, vagina, oropharynx, anus and penis, and adenocarcinoma of the cervix. Additionally, the number of cancer cases preventable by HPV vaccination. Results Among women, incidences of SCC of the anus, oropharynx, vulva and cervical adenocarcinoma increased, while vaginal SCC showed no trend. For these cancers combined, the average annual percentage change (AAPC) during 1953–2015 was 1.2 (95% CI 0.7 to 1.6). The incidence of cervical SCC generally decreased during 1976–2004 and remained stable thereafter. Among men, incidences of SCC of the anus, oropharynx and penis increased. The AAPC during 1953–2015 combined for all male HPV-related cancer was 1.9 (95% CI 1.3 to 2.5). A vaccine against HPV 16/18 might yearly prevent 402 (95% CI 382 to 420) cancers. A vaccine against HPV 16/18/31/33/45/52/58 might yearly prevent 478 (95% CI 464 to 490) cancers, of which 206 (95% CI 202 to 209) occur in non-cervical organs, and 113 (95% CI 110 to 115) occur among men. Conclusions The incidences of HPV-related cancers that are not effectively prevented by screening have generally increased during 1953–2015. HPV vaccination can prevent a substantial number of cancers in Norway, in cervical and non-cervical organs, among women and men. PMID:29476028

Socio-economic inequalities in the incidence of four common cancers: a population-based registry study.

PubMed

Tweed, E J; Allardice, G M; McLoone, P; Morrison, D S

2018-01-01

To investigate the relationship between socio-economic circumstances and cancer incidence in Scotland in recent years. Population-based study using cancer registry data. Data on incident cases of colorectal, lung, female breast, and prostate cancer diagnosed between 2001 and 2012 were obtained from a population-based cancer registry covering a population of approximately 2.5 million people in the West of Scotland. Socio-economic circumstances were assessed based on postcode of residence at diagnosis, using the Scottish Index of Multiple Deprivation (SIMD). For each cancer, crude and age-standardised incidence rates were calculated by quintile of SIMD score, and the number of excess cases associated with socio-economic deprivation was estimated. 93,866 cases met inclusion criteria, comprising 21,114 colorectal, 31,761 lung, 23,757 female breast, and 15,314 prostate cancers. Between 2001 and 2006, there was no consistent association between socio-economic circumstances and colorectal cancer incidence, but 2006-2012 saw an emerging deprivation gradient in both sexes. The incidence rate ratio (IRR) for colorectal cancer between most deprived and least deprived increased from 1.03 (95% confidence interval [CI] 0.91-1.16) to 1.24 (95% CI 1.11-1.39) during the study period. The incidence of lung cancer showed the strongest relationship with socio-economic circumstances, with inequalities widening across the study period among women from IRR 2.66 (95% CI 2.33-3.05) to 2.91 (95% CI 2.54-3.33) in 2001-03 and 2010-12, respectively. Breast and prostate cancer showed an inverse relationship with socio-economic circumstances, with lower incidence among people living in more deprived areas. Significant socio-economic inequalities remain in cancer incidence in the West of Scotland, and in some cases are increasing. In particular, this study has identified an emerging, previously unreported, socio-economic gradient in colorectal cancer incidence among women as well as men. Actions to prevent, mitigate, and undo health inequalities should be a public health priority. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Cancer stage at diagnosis in patients infected with the human immunodeficiency virus and transplant recipients.

PubMed

Shiels, Meredith S; Copeland, Glenn; Goodman, Marc T; Harrell, Janna; Lynch, Charles F; Pawlish, Karen; Pfeiffer, Ruth M; Engels, Eric A

2015-06-15

It is unknown whether immunosuppression results in more aggressive, advanced stage cancers. Because cancer stage is influenced both by tumor biology and medical surveillance, the authors assessed cancer stage in individuals infected with the human immunodeficiency virus (HIV) and solid organ transplant recipients, 2 immunosuppressed groups with differences in their health care use. The authors used data on all cases of 15 cancer types diagnosed during 1996 through 2010 in 2 studies that linked US cancer registries with HIV and transplant registries. Odds ratios (ORs) for advanced (vs local) disease were estimated comparing HIV and transplant populations with immunocompetent individuals in polytomous logistic regression models adjusted for age, sex, race, registry, and year. A total of 8411 of 4.5 million cancer cases occurred in HIV-infected individuals and 7322 of 6.4 million cancer cases occurred in transplant recipients. Compared with immunocompetent patients with cancer, those infected with HIV were more likely to be diagnosed with distant stage lung (OR, 1.13), female breast (OR, 1.99), and prostate (OR, 1.57) cancers, whereas transplant recipients had fewer distant stage lung (OR, 0.54), female breast (OR, 0.75), and prostate (OR, 0.72) cancers. Both immunosuppressed populations had a shift toward advanced stage melanoma (ORs of 1.97 for HIV-infected individuals and 1.82 for transplant recipients) and bladder cancer (ORs of 1.42 for HIV-infected individuals and 1.54 for transplant recipients). Bladder cancer and melanoma were more likely to be diagnosed at a nonlocal stage in both HIV-infected individuals and transplant recipients, suggesting a role for immunosuppression in their progression. In addition, we observed a shift for some common cancers toward later stages in HIV-infected individuals and toward earlier stages in transplant recipients, which is consistent with differential access to medical care or surveillance. © 2015 American Cancer Society.

A Comparison of Functional Outcome in Patients Sustaining Major Trauma: A Multicentre, Prospective, International Study

PubMed Central

Rainer, Timothy H.; Yeung, Hiu Hung; Gabbe, Belinda J.; Yuen, Kai Y.; Ho, Hiu F.; Kam, Chak W.; Chang, Annice; Poon, Wai S.; Cameron, Peter A.; Graham, Colin A.

2014-01-01

Objectives To compare 6 month and 12 month health status and functional outcomes between regional major trauma registries in Hong Kong and Victoria, Australia. Summary Background Data Multicentres from trauma registries in Hong Kong and the Victorian State Trauma Registry (VSTR). Methods Multicentre, prospective cohort study. Major trauma patients and aged ≥18 years were included. The main outcome measures were Extended Glasgow Outcome Scale (GOSE) functional outcome and risk-adjusted Short-Form 12 (SF-12) health status at 6 and 12 months after injury. Results 261 cases from Hong Kong and 1955 cases from VSTR were included. Adjusting for age, sex, ISS, comorbid status, injury mechanism and GCS group, the odds of a better functional outcome for Hong Kong patients relative to Victorian patients at six months was 0.88 (95% CI: 0.66, 1.17), and at 12 months was 0.83 (95% CI: 0.60, 1.12). Adjusting for age, gender, ISS, GCS, injury mechanism and comorbid status, Hong Kong patients demonstrated comparable mean PCS-12 scores at 6-months (adjusted mean difference: 1.2, 95% CI: −1.2, 3.6) and 12-months (adjusted mean difference: −0.4, 95% CI: −3.2, 2.4) compared to Victorian patients. Keeping age, gender, ISS, GCS, injury mechanism and comorbid status, there was no difference in the MCS-12 scores of Hong Kong patients compared to Victorian patients at 6-months (adjusted mean difference: 0.4, 95% CI: −2.1, 2.8) or 12-months (adjusted mean difference: 1.8, 95% CI: −0.8, 4.5). Conclusion The unadjusted analyses showed better outcomes for Victorian cases compared to Hong Kong but after adjusting for key confounders, there was no difference in 6-month or 12-month functional outcomes between the jurisdictions. PMID:25157522

Are Cancer Registries Unconstitutional?

PubMed Central

McLaughlin, Robert H; Clarke, Christina A; Crawley, LaVera M; Glaser, Sally L

2010-01-01

Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of one's individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institute's SEER Program and the US Centers for Disease Control and Prevention's National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the government's possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease. PMID:20199835

Comparison of breast cancer survival in two populations: Ardabil, Iran and British Columbia, Canada.

PubMed

Sadjadi, Alireza; Hislop, T Gregory; Bajdik, Chris; Bashash, Morteza; Ghorbani, Anahita; Nouraie, Mehdi; Babaei, Masoud; Malekzadeh, Reza; Yavari, Parvin

2009-10-28

Patterns in survival can provide information about the burden and severity of cancer, help uncover gaps in systemic policy and program delivery, and support the planning of enhanced cancer control systems. The aim of this paper is to describe the one-year survival rates for breast cancer in two populations using population-based cancer registries: Ardabil, Iran, and British Columbia (BC), Canada. All newly diagnosed cases of female breast cancer were identified in the Ardabil cancer registry from 2003 to 2005 and the BC cancer registry for 2003. The International Classification of Disease for Oncology (ICDO) was used for coding cancer morphology and topography. Survival time was determined from cancer diagnosis to death. Age-specific one-year survival rates, relative survival rates and weighted standard errors were calculated using life-tables for each country. Breast cancer patients in BC had greater one-year survival rates than patients in Ardabil overall and for each age group under 60. These findings support the need for breast cancer screening programs (including regular clinical breast examinations and mammography), public education and awareness regarding early detection of breast cancer, and education of health care providers.

[Hungarian Philadelphia negative chronic myeloproliferative neoplasia registry. Evaluation of the Polycythemia vera patients].

PubMed

Dombi, Péter; Illés, Árpád; Demeter, Judit; Homor, Lajos; Simon, Zsófia; Kellner, Ádám; Karádi, Éva; Valasinyószki, Erika; Udvardy, Miklós; Egyed, Miklós

2017-06-01

Intruduction and aim: The Hungarian National Registry for Philadelphia chromosome negative myeloproliferative neoplasms has been developed. The aim of the recent study is to assess the clinical characteristics of Hungarian patients with polycythemia vera. Data of 351 JAK2 V617F and exon 12 mutation positive polycythemia vera patients were collected online from 15 haematology centres reporting epidemiologic, clinical characteristics, diagnostic tools, therapeutic interventions, thromboembolic complications, disease transformations. Vascular events prior to and after diagnosis were evaluated upon the Landolfi risk assessment scale. 116 thromboembolic events were reported in 106 PV patients prior to diagnosis and 152 occasions in 102 patients during follow-up. The frequency of major arterial events were significantly reduced (p<0.0001) and the minor venous events were significantly elevated (p<0.0001) after the diagnosis. Major hemorrhagic complications were found in 25 and transformation in 26 cases. Our registry allows to collect and evaluate the features of patients with polycythemia vera. The Landolfi risk stratification was proven to be useful. Based on evaluated data, accuracy of diagnostic criteria and compliance to risk-adapted therapeutic guidelines are needed. Orv Hetil. 2017; 158(23): 901-909.

DOE Office of Scientific and Technical Information (OSTI.GOV)

Saccomanno, G.

This work, supported by the United States Department of Energy, continues to add data on the health effects of cigarette smoking and radon exposure. Since the beginning of this contract, 473 sputum samples have been collected from 286 uranium workers who are routinely screened in an effort to identify cell changes that could signal possible progression to lung cancer; seven new lung cancer cases have been identified during this period. At this time, there are 426 lung cancer cases in the uranium miner tumor registry with diagnostic slides from surgery and/or autopsy; an additional 40 cases have been diagnosed withmore » sputum cytology only.« less

20 CFR 655.34 - Electronic job registry.

Code of Federal Regulations, 2014 CFR

2014-04-01

... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

20 CFR 655.34 - Electronic job registry.

Code of Federal Regulations, 2013 CFR

2013-04-01

... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

The Cost of Doing Business: Cost Structure of Electronic Immunization Registries

PubMed Central

Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

2002-01-01

Objective To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Data Sources/Study Setting Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. Study Design A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data Collection/Extraction Methods Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. Principal Findings The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. Conclusions There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment. PMID:12479497

[Palliative sedation in a university hospital: experience after introducing a specific protocol].

PubMed

Boceta Osuna, J; Nabal Vicuña, M; Martínez Peñalver, F; Blanco Picabia, A; Aguayo Canela, M; Royo Aguado, J L

2013-01-01

A descriptive prospective study of palliative sedation (PS) records during a one year period after starting the PS protocol. Patients included in the PS protocol and those who had completed the "data registry form". Registry forms included in the PS protocol as Annex 5 (included as Annex 1 in this study). Personal data, data regarding basal disease, prognosis, level of information. Refractory symptoms: type, time of evolution and treatments employed. Involvement of the patient and/or representatives in decision making. Type of sedation, continuity, depth, employed, duration and results, and readjustment of other therapeutic measures. The SPSS 14.0 was used. For qualitative variables we studied absolute frequencies and proportions. For quantitative variables with normal distribution, we used means and standard deviations, and for non-normal distribution, medians and ranges. In the study period 90 cases of PS were counted. This represented 27.6% of the patients treated in the hospital palliative care support team (PCST), and 7.03% of the total deceased patients in our hospital. Mean age of patients undergoing PS was 59.22 years old, range between 40.86 and 77.58 years, and 68.1% were men. All patients were in an advanced or terminal stage of their condition, and 49.5% in an agonal phase. In 90.4% of the cases, the main pathology was oncological. Regarding PS indication, this was jointly made between the PCST physician and the patient's usual doctor in 60 cases (66.6%). Symptoms leading to sedation were mainly dyspnea, delirium and pain. The Ethics committee was consulted in five cases. Mean time under sedation was 134.02 hours (5.5 days). In 90% of the cases, duration ranged from 50 to 218.04 hours (2-9 days). Depth of PS after induction was registered in 88.8% of the cases. Informed consent (IC) was explicit in 11.2% of the cases,and given prior to the appearance of refractory symptoms and/or agonal phase. In 88.8% of sedation cases, the IC was given by a representative. Midazolam was the most used drug of choice in 87.8% of the cases, and levomepromazine in 10.2%. Up to 15% of sedations required drug changes or combinations. 1) The application of a PS Protocol and the availability of a hospital PCST and an Ethical Care Committee favored a safe (correct) use of PS in a hospital lacking a palliative care unit (PCU), and a homogeneous data registry for their analysis, with quality criteria similar to those offered by a PCU. 2) We have detected areas of improvement that will be applied in the second version of our protocol. Copyright © 2012 SECA. Published by Elsevier Espana. All rights reserved.

Analysis of modeling cumulative noise from simultaneous flights volume 2 : supplemental analysis

DOT National Transportation Integrated Search

2012-12-31

This is the second of two volumes of the report on modeling cumulative noise from simultaneous flights. This volume examines the effect of several modeling input cases on Percent Time Audible results calculated by the Integrated Noise Model. The case...

Simultaneous bilateral elbow dislocation with bilateral medial epicondyle fractures in a 13-year-old female gymnast with hyperlaxity

PubMed Central

Bauer, Stefan; Dunne, Ben; Whitewood, Colin

2012-01-01

Bilateral simultaneous elbow dislocations are extremely rare and have only been described in 12 cases. In the paediatric population unilateral elbow dislocations are rare with 3–6% of all elbow injuries and there are only few studies describing this injury exclusively in children. There is only one case report of a paediatric patient who sustained a simultaneous bilateral elbow dislocation with medial epicondyle fractures. We present a second paediatric case of simultaneous bilateral elbow dislocation with associated displaced bilateral medial epicondyle fractures in a gymnast with joint hyperlaxity (3 of 5 Wynne-Davies criteria) treated with closed reduction and short-term immobilisation (3 weeks). The patient returned to full trampoline gymnastics between 4 and 5 months postinjury and made an uneventful recovery. PMID:23234820

Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: a cross-sectional study.

PubMed

Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

2008-05-14

Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. We conducted two evaluations - one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry - of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11-17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were older at their first visit to the provider site. For 11-17-year-old subjects, discrepancies were also common for MMR, hepatitis B, and varicella vaccination data. Provider records frequently could not be matched to registry records or had discrepancies in key immunization data. These issues were more common for older children and were present even with electronic data transfer. These results highlight general challenges that may face investigators wishing to use registry-based immunization data for vaccine effectiveness studies, especially in adolescents.

Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: A cross-sectional study

PubMed Central

Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

2008-01-01

Background Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. Methods We conducted two evaluations – one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry – of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11–17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Results Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were older at their first visit to the provider site. For 11–17-year-old subjects, discrepancies were also common for MMR, hepatitis B, and varicella vaccination data. Conclusion Provider records frequently could not be matched to registry records or had discrepancies in key immunization data. These issues were more common for older children and were present even with electronic data transfer. These results highlight general challenges that may face investigators wishing to use registry-based immunization data for vaccine effectiveness studies, especially in adolescents. PMID:18479517

Iowa radon leukaemia study: a hierarchical population risk model for spatially correlated exposure measured with error.

PubMed

Smith, Brian J; Zhang, Lixun; Field, R William

2007-11-10

This paper presents a Bayesian model that allows for the joint prediction of county-average radon levels and estimation of the associated leukaemia risk. The methods are motivated by radon data from an epidemiologic study of residential radon in Iowa that include 2726 outdoor and indoor measurements. Prediction of county-average radon is based on a geostatistical model for the radon data which assumes an underlying continuous spatial process. In the radon model, we account for uncertainties due to incomplete spatial coverage, spatial variability, characteristic differences between homes, and detector measurement error. The predicted radon averages are, in turn, included as a covariate in Poisson models for incident cases of acute lymphocytic (ALL), acute myelogenous (AML), chronic lymphocytic (CLL), and chronic myelogenous (CML) leukaemias reported to the Iowa cancer registry from 1973 to 2002. Since radon and leukaemia risk are modelled simultaneously in our approach, the resulting risk estimates accurately reflect uncertainties in the predicted radon exposure covariate. Posterior mean (95 per cent Bayesian credible interval) estimates of the relative risk associated with a 1 pCi/L increase in radon for ALL, AML, CLL, and CML are 0.91 (0.78-1.03), 1.01 (0.92-1.12), 1.06 (0.96-1.16), and 1.12 (0.98-1.27), respectively. Copyright 2007 John Wiley & Sons, Ltd.

Simultaneous use of several monitoring techniques to measure visitor load, spatio-temporal distribution and social characteristics of tourists - a case study of a cable car area in the Carpathian Mountains, Tatra National Park

NASA Astrophysics Data System (ADS)

Taczanowska, Karolina; Zięba, Antoni; Brandenburg, Christiane; Muhar, Andreas; Preisel, Hemma; Hibner, Joanna; Latosinska, Barbara; Benítez, Rafael; Bolós, Vicente; Toca-Herrera, José L.; Ziobrowski, Szymon

2017-04-01

Visitor monitoring is an integrate part of the effective management of recreational and protected areas. Comprehensive information concerning volume of tourist traffic, spatial-temporal distribution of visitors in a leisure setting as well as visitor socio-demographic characteristics may support understanding human behaviour and the ongoing natural processes (trail deterioration, erosion, impact on flora and fauna). Especially, vulnerable areas that in the same time serve as tourist attractions need to be carefully investigated. One of such areas is Kasprowy Wierch (1987 m.a.s.l.) - a popular cable car destination located in the Carpathian Mountains, Tatra National Park, Poland / Slovakia. The aim of this study was to define the overall visitor load and to understand visitor behaviour in the proximity of the upper cable car station at Kasprowy Wierch. The main focus of this presentation is the comparison of the used monitoring techniques and exposing the benefit of their simultaneous application. Visitor monitoring campaign was carried out in the study area in the summer season 2014. The following data collection techniques were simultaneously applied: 1) automatic counting (Eco-Counter pyroelectric sensors), 2) manual counting; 3) on-site interviews combined with trip diaries and visitor observation 4) GPS-tracking 5) registry of cable car tickets 6) registry of entries to the national park (TPN). Between 26.06.2014 and 30.09.2014 at 7 locations a continuous automatic counting of visitors was done using pyroelectric sensors (Eco-Counter). Additionally, on 18 sampling days at 12 locations direct observations (manual counting) of visitor flows was carried out. During the sampling days tourists were interviewed in the field using structured questionnaires (PAPI survey technique, N = 2639). Survey was combined with a documentation of visitors' trip itineraries via GPS-loggers and map sketches. Totally 1250 GPS-tracks of visitors and 1351 map sketches have been collected. Between July and September 2014 a total number of 292 493 visitors moving towards Kasprowy Wierch (KW) were registered in the cable car and on recreational trails leading to KW. 80% of people used cable car, whereas 20% were using hiking trails to get to the summit and back. Cable car users with return tickets were the most numerous tourist group in the Kasprowy Wierch area. Between July and September 2014 the share of specific ticket types among cable car users was as follows: return tickets „up & down" = 59%, on-way tickets „up" = 26%, on-way tickets „down" = 15%. In the summer season 2014 on average 3179 visitors per day arrived to KW area. The maximum tourist traffic was observed in August 2014 where daily number of visitors exceded 7000. Two most intensively used path segments were located next to the upper cable car station (cable car station - Sucha Pass; cable car station - meteorological station/summit of KW). Third most heavily used path segment was located between Sucha Pass and the summit of Beskid. Visitor load at path segments located next to the cable car station was on average 5-10 times higher than the visitor load at other hiking trails in the area (e.g. trail linking Kasprowy Wierch and Czerwone Wierchy or Liliowe Pass and Świnica). Each monitoring technique allows gaining different type of information. Simultaneous use of several data collection methods has an additional added value when trying to understand tourist behaviour in the studied area. The results can be used as a basis for further investigation concerning environmental and social impacts in the Kasprowy Wierch area and may assist management of the Tatra National Park.

Endocarditis in patients with ascending aortic prosthetic graft: a case series from a national multicentre registry.

PubMed

Ramos, Antonio; García-Montero, Carlos; Moreno, Alfonso; Muñoz, Patricia; Ruiz-Morales, Josefa; Sánchez-Espín, Gemma; Porras, Carlos; Sousa, Dolores; Castelo, Laura; Del Carmen Fariñas, María; Gutiérrez, Francisco; Reguera, José María; Plata, Antonio; Bouza, Emilio; Antorrena, Isabel; de Alarcón, Arístides; Pericás, José Manuel; Gurguí, Mercedes; Rodríguez-Abella, Hugo; Ángel Goenaga, Miguel; Antonio Oteo, José; García-Pavía, Pablo

2016-12-01

Endocarditis in patients with ascending aortic prosthetic graft (AAPG) is a life-threatening complication. The purpose of this study was to examine the clinical presentation and prognosis of patients with AAPG endocarditis included in a large prospective infectious endocarditis multicentre study. From January 2008 to April 2015, 3200 consecutive patients with infectious endocarditis according to the modified Duke criteria, were prospectively included in the 'Spanish Collaboration on Endocarditis Registry (GAMES)' registry. Twenty-seven definite episodes of endocarditis (0.8%) occurred in patients with AAPG. During the study period, 27 cases of endocarditis were detected in patients with AAPG. The median age of patients was 61 years [interquartile range (IQR) 51-68 years] and 23 (85.2%) patients were male. The median time from AAPG surgery to the episode of AAPG infection was 24 months (IQR 6-108 months). The most frequently isolated micro-organisms were coagulase-negative staphylococci and S. aureus (11 patients, 40.7%). Four patients (14.8%) underwent medical treatment, whereas surgery was performed in 21 (77.7%). Two patients (7.4%) died before surgery could be performed. The median hospital stay prior to surgery was 7 days (IQR 4-21 days). Surgery consisted of replacing previous grafts with a composite aortic graft (10 cases) or aortic homograft (2 patients), and removal of a large vegetation attached to the valve of a composite tube (1 case). Nine patients had an infected aortic valve prosthesis without evidence of involvement of the AAPG. Isolated redo-aortic valve replacement was performed in 8 (88.9%) of these patients. Reinfection occurring during 1 year of follow-up was not detected in any patient. Two patients (7.4%) died while awaiting surgery and 6 did so after surgery (22.2%). A New York Heart Association (NYHA) Class IV was associated with mortality in patients undergoing surgery (P < 0.019). Most cases of endocarditis in patients with AAPG occur late after initial surgery. Mortality rate of patients with AAPG endocarditis who undergo surgery is acceptable. NYHA Class IV before surgery is associated with an increased postoperative mortality. © The Author 2016. Published by Oxford University Press on behalf of the European Association for Cardio-Thoracic Surgery. All rights reserved.

Clinical characterization and mutation spectrum in Hispanic families with adenomatous polyposis syndromes.

PubMed

Cruz-Correa, Marcia; Diaz-Algorri, Yaritza; Mendez, Vanessa; Vazquez, Pedro Juan; Lozada, Maria Eugenia; Freyre, Katerina; Lathroum, Liselle; Gonzalez-Pons, Maria; Hernandez-Marrero, Jessica; Giardiello, Francis; Rodriguez-Quilichini, Segundo

2013-09-01

Several genetically defined hereditary colorectal cancer (CRC) syndromes are associated with colonic polyposis including familial adenomatous polyposis (FAP) and MUTYH adenomatous polyposis (MAP). Limited data exists on the clinical characterization and genotypic spectrum of polyposis syndromes among Hispanics. To describe the phenotype and genotype of Puerto Rican Hispanic patients with FAP and MUTYH and compare with other ethnic and racial groups. Probands were identified from the Puerto Rico Familial Colorectal Cancer Registry (PURIFICAR). Recruited individuals completed risk factors, medical, and family history questionnaires and underwent genetic testing for genotype analysis. Frequency analysis, Chi square, Fisher's exact and Wilcoxon rank-sum tests were used for statistical analysis methods. A total of 31 FAP (from 19 families) and 13 MAP (from 13 families) Hispanic patients recruited from the PURIFICAR were evaluated. Among the FAP cases, mean age at diagnosis was 27.6 (range 9-71 years); 67.7 % cases had more than 100 polyps and 41.9 % had upper gastrointestinal polyps. Among the 19 FAP families, there were 77 affected FAP individuals and 26 colorectal cancer cases. Genetic mutations were available for 42.2 % of FAP families; all mutations identified were unique. Surgeries were reported in 31 cases; 14 (45.2 %) prophylactic surgeries and 6 (19.4 %) therapeutic surgeries for management of CRC. Among MAP cases, mean age at diagnosis was 53 (range 34-76 years). Genetic analysis revealed homozygous biallelic mutations (G382D) in 53.8 %, compound heterozygous mutations (G382/Y165C) in 23 %, and non-G382/Y165C monoallelic mutations in 23 %. Familial cancer registries should be promoted as vehicles for detection, education and follow up of families at-risk of acquiring familial cancers. PURIFICAR is the first and only familial cancer registry in Puerto Rico providing these services to families affected with familial cancer syndromes promoting education, testing and surveillance of at-risk family members, and focusing on cancer prevention efforts. The fact that only 40 % of FAP patients had access to genetic testing stresses the need to promote the establishment of policies supporting genetic testing coverage by medical insurance companies in order to provide patients with the highest standard of care to prevent cancer. Furthermore, our results suggest that Hispanics may have uncommon mutations in adenomatous polyposis related genes, which emphasize the need for full gene sequencing to establish genetic diagnosis.

Kidney Failure and ESRD in the Atherosclerosis Risk in Communities (ARIC) Study: Comparing Ascertainment of Treated and Untreated Kidney Failure in a Cohort Study.

PubMed

Rebholz, Casey M; Coresh, Josef; Ballew, Shoshana H; McMahon, Blaithin; Whelton, Seamus P; Selvin, Elizabeth; Grams, Morgan E

2015-08-01

Linkage to the US Renal Data System (USRDS) registry commonly is used to identify end-stage renal disease (ESRD) cases, or kidney failure treated with dialysis or transplantation, but it underestimates the total burden of kidney failure. This study validates a kidney failure definition that includes both kidney failure treated and not treated by dialysis or transplantation. It compares kidney failure risk factors and outcomes using this broader definition with USRDS-identified ESRD risk factors and outcomes. Diagnostic test study with stratified random sampling of hospitalizations for chart review. Atherosclerosis Risk in Communities Study (n=11,530; chart review, n=546). USRDS-identified ESRD; treated or untreated kidney failure defined by USRDS-identified ESRD or International Classification of Diseases, Ninth or Tenth Revision, Clinical Modification (ICD-9-CM/ICD-10-CM) code for hospitalization or death. For ESRD, determination of permanent dialysis therapy or transplantation; for kidney failure, determination of permanent dialysis therapy, transplantation, or estimated glomerular filtration rate < 15 mL/min/1.73 m(2). During 13 years' median follow-up, 508 kidney failure cases were identified, including 173 (34.1%) from the USRDS registry. ESRD and kidney failure incidence were 1.23 and 3.66 cases per 1,000 person-years in the overall population and 1.35 and 6.59 cases per 1,000 person-years among participants older than 70 years, respectively. Other risk-factor associations were similar between ESRD and kidney failure, except diabetes and albuminuria, which were stronger for ESRD. Survivals at 1 and 5 years were 74.0% and 24.0% for ESRD and 59.8% and 31.6% for kidney failure, respectively. Sensitivity and specificity were 88.0% and 97.3% comparing the kidney failure ICD-9-CM/ICD-10-CM code algorithm to chart review; for USRDS-identified ESRD, sensitivity and specificity were 94.9% and 100.0%. Some medical charts were incomplete. A kidney failure definition including treated and untreated disease identifies more cases than linkage to the USRDS registry alone, particularly among older adults. Future studies might consider reporting both USRDS-identified ESRD and a more inclusive kidney failure definition. Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Kidney Failure and ESRD in the Atherosclerosis Risk in Communities (ARIC) Study: Comparing Ascertainment of Treated and Untreated Kidney Failure in a Cohort Study

PubMed Central

Rebholz, Casey M.; Coresh, Josef; Ballew, Shoshana H.; McMahon, Blaithin; Whelton, Seamus P.; Selvin, Elizabeth; Grams, Morgan E.

2015-01-01

Background Linkage to the US Renal Data System (USRDS) registry is commonly used to identify end-stage renal disease (ESRD) cases, or kidney failure treated with dialysis or transplantation, but it underestimates the total burden of kidney failure. This study validates a kidney failure definition that includes both kidney failure treated and not treated by dialysis or transplantation. It compares kidney failure risk factors and outcomes using this broader definition to USRDS-identified ESRD risk factors and outcomes. Study Design Diagnostic test study with stratified random sampling of hospitalizations for chart review. Setting & Participants Atherosclerosis Risk in Communities Study (N=11,530; chart review n=546). Index Test USRDS-identified ESRD; treated or untreated kidney failure defined by USRDS-identified ESRD or International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM)/ICD-10-CM code from hospitalization or death. Reference Test For ESRD, determination of permanent dialysis or transplantation; for kidney failure, determination of permanent dialysis, transplantation, or eGFR <15 mL/min/1.73 m2. Results Over 13 years' median follow-up, 508 kidney failure cases were identified, including 173 (34.1%) from the USRDS registry. ESRD and kidney failure incidence were 1.23 and 3.66 cases per 1,000 person-years in the overall population, and 1.35 and 6.59 cases per 1,000 person-years among participants older than 70 years, respectively. Other risk factor associations were similar between ESRD and kidney failure, except diabetes and albuminuria which were stronger for ESRD. Survival at 1 and 5 years were 74.0% and 24.0% for ESRD and 59.8% and 31.6% for kidney failure, respectively. Sensitivity and specificity were 88.0% and 97.3% comparing the kidney failure ICD-9-CM/ICD-10-CM code algorithm to chart review; for USRDS-identified ESRD, sensitivity and specificity were 94.9% and 100.0%. Limitations Some medical charts were incomplete. Conclusions A kidney failure definition including treated and untreated disease identifies more cases than linkage to the USRDS registry alone, particularly among older adults. Future studies might consider reporting both USRDS-identified ESRD and a more inclusive kidney failure definition. PMID:25773483

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2013 CFR

2013-04-01

... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2010 CFR

2010-04-01

... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2014 CFR

2014-04-01

... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2011 CFR

2011-04-01

... 20 Employees' Benefits 3 2011-04-01 2011-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2012 CFR

2012-04-01

... 20 Employees' Benefits 3 2012-04-01 2012-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

Robotic-Assisted Simultaneous Repair of Paraesophageal Hernia and Morgagni Hernia: Technical Report.

PubMed

Fu, Shawn S; Carton, Melissa M; Ghaderi, Iman; Galvani, Carlos A

2017-12-13

Morgagni hernias are a rare form of congenital diaphragmatic hernia, accounting for 2%-3% of cases. The presence of a simultaneous Morgagni hernia and paraesophageal hernia (PEH) is even more rare, with only a few reported cases in the surgical literature. Both open and laparoscopic surgical approaches have been previously described. Herein we discuss a robotic-assisted surgical approach to the repair of simultaneous Morgagni hernia and PEH in a 65-year-old woman. Simultaneous repair of Morgagni hernia and PEH is indicated mainly when symptoms are generally indistinctive. The use of robotic technology allowed for both hernias to be repaired both primarily and with mesh reinforcement.

The utility of heart failure registries: a descriptive and comparative study of two heart failure registries.

PubMed

Trullàs, Joan Carles; Miró, Òscar; Formiga, Francesc; Martín-Sánchez, Francisco Javier; Montero-Pérez-Barquero, Manuel; Jacob, Javier; Quirós-López, Raúl; Herrero Puente, Pablo; Manzano, Luís; Llorens, Pere

2016-05-01

Registries are useful to address questions that are difficult to answer in clinical trials. The objective of this study was to describe and compare two heart failure (HF) cohorts from two Spanish HF registries. We compared the RICA and EAHFE registries, both of which are prospective multicentre cohort studies including patients with decompensated HF consecutively admitted to internal medicine wards (RICA) or attending the emergency department (EAHFE). From the latter registry we only included patients who were admitted to internal medicine wards. A total of 5137 patients admitted to internal medicine wards were analysed (RICA: 3287 patients; EAHFE: 1850 patients). Both registries included elderly patients (RICA: mean (SD) age 79 (9) years; EAHFE: mean (SD) age 81 (9) years), with a slight predominance of female gender (52% and 58%, respectively, in the RICA and EAHFE registries) and with a high proportion of patients with preserved ejection fraction (58% and 62%, respectively). Some differences in comorbidities were noted, with diabetes mellitus, dyslipidaemia, chronic renal failure and atrial fibrillation being more frequent in the RICA registry while cognitive and functional impairment predominated in the EAHFE registry. The 30-day mortality after discharge was 3.4% in the RICA registry and 4.8% in the EAHFE registry (p<0.05) and the 30-day readmission rate was 7.5% in the RICA registry (readmission to hospital) and 24.0% in the EAHFE registry (readmission to emergency department) (p<0.001). We found differences in the clinical characteristics of patients admitted to Spanish internal medicine wards for decompensated HF depending on inclusion in either the RICA or EAHFE registry. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Characteristics of clinical trial websites: information distribution between ClinicalTrials.gov and 13 primary registries in the WHO registry network.

PubMed

Ogino, Daisuke; Takahashi, Kunihiko; Sato, Hajime

2014-11-05

It is well known that information about clinical trials is not easily accessible by the public. In Japan, clinical trial information can be accessed by the general public through online registries; however, many people find these registries difficult to use. To improve current clinical trial registries, we propose that combining them with clinical information phrased in lay terms would be beneficial to other interested professionals such as journalists and clinicians, as well as the general public. Therefore, this study aimed to examine the current pattern of distribution of clinical trial information from the primary World Health Organization (WHO) registries. Based on the results of this assessment, we then aimed to build and evaluate a prototype of the Japan Primary Registries Network (JPRN) portal that would be easily accessible to patients and the public, while still remaining useful for professionals. We assessed a total of 14 primary clinical trial registries listed on the WHO International Clinical Trials Registry Platform between January and February 2013. Website content was accessed and checked against a series of items that looked at usability, communication, design and accessibility of the sites. We excluded registries that were not active or were not on the approved WHO registry list at the time of our assessment. We also examined only the English versions of the websites as native-language registries may offer more functionality or different content than the English version of the same website. All registries examined had a function allowing users to search the registry data and that displayed the related information from the search, including the clinical trial registration data. However, few websites were found to be user-friendly, and there was little integration with social media. We confirmed that there are few websites providing useful clinical trial information to patients and their families. However, information gleaned from some of the more advanced online registries could be used to improve the content and functionality of the JPRN portal.

Rationale, Design, Methodology and Hospital Characteristics of the First Gulf Acute Heart Failure Registry (Gulf CARE).

PubMed

Sulaiman, Kadhim J; Panduranga, Prashanth; Al-Zakwani, Ibrahim; Alsheikh-Ali, Alawi; Al-Habib, Khalid; Al-Suwaidi, Jassim; Al-Mahmeed, Wael; Al-Faleh, Husam; El-Asfar, Abdelfatah; Al-Motarreb, Ahmed; Ridha, Mustafa; Bulbanat, Bassam; Al-Jarallah, Mohammed; Bazargani, Nooshin; Asaad, Nidal; Amin, Haitham

2014-01-01

There is paucity of data on heart failure (HF) in the Gulf Middle East. The present paper describes the rationale, design, methodology and hospital characteristics of the first Gulf acute heart failure registry (Gulf CARE). Gulf CARE is a prospective, multicenter, multinational registry of patients >18 year of age admitted with diagnosis of acute HF (AHF). The data collected included demographics, clinical characteristics, etiology, precipitating factors, management and outcomes of patients admitted with AHF. In addition, data about hospital readmission rates, procedures and mortality at 3 months and 1-year follow-up were recorded. Hospital characteristics and care provider details were collected. Data were entered in a dedicated website using an electronic case record form. A total of 5005 consecutive patients were enrolled from February 14, 2012 to November 13, 2012. Forty-seven hospitals in 7 Gulf States (Oman, Saudi Arabia, Yemen, Kuwait, United Gulf Emirates, Qatar and Bahrain) participated in the project. The majority of hospitals were community hospitals (46%; 22/47) followed by non-University teaching (32%; 15/47 and University hospitals (17%). Most of the hospitals had intensive or coronary care unit facilities (93%; 44/47) with 59% (28/47) having catheterization laboratory facilities. However, only 29% (14/47) had a dedicated HF clinic facility. Most patients (71%) were cared for by a cardiologist. Gulf CARE is the first prospective registry of AHF in the Middle East, intending to provide a unique insight into the demographics, etiology, management and outcomes of AHF in the Middle East. HF management in the Middle East is predominantly provided by cardiologists. The data obtained from this registry will help the local clinicians to identify the deficiencies in HF management as well as provide a platform to implement evidence based preventive and treatment strategies to reduce the burden of HF in this region.

Rationale, Design, Methodology and Hospital Characteristics of the First Gulf Acute Heart Failure Registry (Gulf CARE)

PubMed Central

Sulaiman, Kadhim J.; Panduranga, Prashanth; Al-Zakwani, Ibrahim; Alsheikh-Ali, Alawi; Al-Habib, Khalid; Al-Suwaidi, Jassim; Al-Mahmeed, Wael; Al-Faleh, Husam; El-Asfar, Abdelfatah; Al-Motarreb, Ahmed; Ridha, Mustafa; Bulbanat, Bassam; Al-Jarallah, Mohammed; Bazargani, Nooshin; Asaad, Nidal; Amin, Haitham

2014-01-01

Background: There is paucity of data on heart failure (HF) in the Gulf Middle East. The present paper describes the rationale, design, methodology and hospital characteristics of the first Gulf acute heart failure registry (Gulf CARE). Materials and Methods: Gulf CARE is a prospective, multicenter, multinational registry of patients >18 year of age admitted with diagnosis of acute HF (AHF). The data collected included demographics, clinical characteristics, etiology, precipitating factors, management and outcomes of patients admitted with AHF. In addition, data about hospital readmission rates, procedures and mortality at 3 months and 1-year follow-up were recorded. Hospital characteristics and care provider details were collected. Data were entered in a dedicated website using an electronic case record form. Results: A total of 5005 consecutive patients were enrolled from February 14, 2012 to November 13, 2012. Forty-seven hospitals in 7 Gulf States (Oman, Saudi Arabia, Yemen, Kuwait, United Gulf Emirates, Qatar and Bahrain) participated in the project. The majority of hospitals were community hospitals (46%; 22/47) followed by non-University teaching (32%; 15/47 and University hospitals (17%). Most of the hospitals had intensive or coronary care unit facilities (93%; 44/47) with 59% (28/47) having catheterization laboratory facilities. However, only 29% (14/47) had a dedicated HF clinic facility. Most patients (71%) were cared for by a cardiologist. Conclusions: Gulf CARE is the first prospective registry of AHF in the Middle East, intending to provide a unique insight into the demographics, etiology, management and outcomes of AHF in the Middle East. HF management in the Middle East is predominantly provided by cardiologists. The data obtained from this registry will help the local clinicians to identify the deficiencies in HF management as well as provide a platform to implement evidence based preventive and treatment strategies to reduce the burden of HF in this region. PMID:24949181

The HOPE (Helping to Outline Paediatric Eating Disorders) Project: development and debut of a paediatric clinical eating disorder registry

PubMed Central

2013-01-01

Background The HOPE (Helping to Outline Paediatric Eating Disorders) Project is an ongoing registry study made up of a sequential cross-sectional sample prospectively recruited over 17 years, and is designed to answer empirical questions about paediatric eating disorders. This paper introduces the HOPE Project, describes the registry sample to-date, and discusses future directions and challenges and accomplishments. The project and clinical service were established in a tertiary academic hospital in Western Australia in 1996 with a service development grant. Research processes were inbuilt into the initial protocols and data collection was maintained in the following years. Recognisable progress with the research agenda accelerated only when dedicated research resources were obtained. The registry sample consists of consecutive children and adolescents assessed at the eating disorder program from 1996 onward. Standardised multidisciplinary data collected from family intake interview, parent and child clinical interviews, medical review, parent, child and teacher psychometric assessments, and inpatient admission records populate the HOPE Project database. Results The registry database to-date contains 941 assessments, of whom 685 met DSM-IV diagnostic criteria for an eating disorder at admission. The majority of the sample were females (91%) from metropolitan Perth (83%). The cases with eating disorders consist of eating disorders not otherwise specified (68%), anorexia nervosa (25%) and bulimia nervosa (7%). Among those with eating disorders, a history of weight loss since illness onset was almost universal (96%) with fear of weight gain (71%) common, and the median duration of illness was 8 months. Conclusions Over the next five years and more, we expect that the HOPE Project will make a strong scientific contribution to paediatric eating disorders research and will have important real-world applications to clinical practice and policy as the research unfolds. PMID:24999409

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

PubMed

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-06-01

The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective

PubMed Central

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-01-01

Aim The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. Methods A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. Results The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Conclusions Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers. PMID:28276780

Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data.

PubMed

Chaturvedi, Meesha; Vaitheeswaran, K; Satishkumar, K; Das, Priyanka; Stephen, S; Nandakumar, A

2015-12-01

The trends observed in cancer breast among Indian women are an indication of effect of changing lifestyle in population. To draw an appropriate inference regarding the trends of a particular type of cancer in a country, it is imperative to glance at the reliable data collected by Population Based Cancer Registries over a period of time. To give an insight of changing trends of breast cancer which have taken place over a period of time among women in Cancer Registries of India. Breast Cancer trends for invasive breast cancer in women in Indian Registries have varied during the selected period. Occurrence of breast cancers has also shown geographical variation in India. This data was collected by means of a 'Standard Core Proforma' designed by NCRP conforming to the data fields as suggested by International norms. The Proforma was filled by trained Registry workers based on interview/ hospital medical records/ supplementing data by inputs from treating surgeons/radiation oncologists/involved physicians/pathologists. The contents of the Proforma are entered into specifically created software and transmitted electronically to the coordinating center at Bangalore. The registries contributing to more number of years of data are called as older registries, while other recently established registries are called newer registries. While there has been an increase recorded in breast cancer in most of the registries, some of them have recorded an insignificant increase. Comparison of Age Adjusted Rates (AARs) among Indian Registries has been carried out after which trends observed in populations covered by Indian Registries are depicted. A variation in broad age groups of females and the proneness of females developing breast cancer over the period 1982 to 2010 has been shown. Comparisons of Indian registries with International counterparts have also been carried out. There are marked changes in incidence rates of cancer breast which have occurred in respective registries in a developing country like India. A steady increase in AARs in most of the registries of India including the newly established registries is indicative of the fact that cancer breast poses a threat to women in India.

Private provider participation in statewide immunization registries

PubMed Central

Clark, Sarah J; Cowan, Anne E; Bartlett, Diana L

2006-01-01

Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756). Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68%) and printable immunization records (N = 82, 55%) were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38%) and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%). Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87%) and to review immunization records of individual patients (N = 302, 81%). A minority reported using it to assess their practice's immunization coverage (N = 110, 29%) or generate reminder/recall notices (N = 54, 14%). Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%). Conclusion Most registry participants report active participation with few problems. The problems they report are generally consistent with the barriers anticipated by non-participants, but did not impede participation. Recruitment efforts should focus on demonstrating the benefits of the registry to providers. In addition, many participants are not utilizing the full range of registry features; further study is needed to determine how best to increase use of these features. PMID:16480494

Congenital Microphthalmia, Anophthalmia and Coloboma among Live Births in Denmark.

PubMed

Roos, Laura; Jensen, Hanne; Grønskov, Karen; Holst, René; Tümer, Zeynep

2016-10-01

This study aims to quantify the occurrence of the congenital eye malformations anophthalmia (AO), microphthalmia (MO) and coloboma among liveborn infants in Denmark, and to estimate the rate of chromosomal abnormalities in this group of patients. A cohort of patients born in 1995-2012 with diagnoses of MO/AO or coloboma was identified from the Danish National Patient Registry (DNPR), and their ocular and extra-ocular diagnoses were reviewed. In order to assess the occurrence of chromosomal abnormalities in the cohort, the data were cross-referenced with the Danish Cytogenetic Central Registry (DCCR). We identified 415 patients with MO/AO/coloboma in the DNPR. The total number of live births from 1995-2012 was 1,174,299, and the average birth prevalence of MO/AO/coloboma was 3.6/10,000 live births and of MO/AO was 1.2/10,000 live births. Extra-ocular abnormalities were observed in 32.1% of MO/AO cases and 21.7% of coloboma cases. Chromosome analysis was performed in 36.1% of the cohort, and 14.7% of cases had an abnormal karyotype. In 8.7% of the cohort, a chromosome microarray analysis was performed, and in 44.4% of cases, a possibly pathogenic copy number variation was observed. The birth prevalence of MO/AO/coloboma in Denmark has been steady at 3.6/10,000 live births during the last 17 years. The rate of syndromic cases was lower compared to other studies. A relatively high rate of pathogenic chromosomal aberrations was observed, suggesting an important role for cytogenetic analysis in this group of patients.

Type 1 diabetes in India: Overall insights.

PubMed

Das, Ashok Kumar

2015-04-01

Type 1 diabetes mellitus (T1DM) is also on increase like type 2 diabetes, even though not in the same proportion, but still with a trend of 3-5% increase/year. India has three new cases of T1DM/100,000 children of 0-14 years. Three sets of prevalence data shows 17.93 cases/100,000 children in Karnataka, 3.2 cases/100,000 children in Chennai, and 10.2 cases/100,000 children in Karnal (Haryana). T1DM may be autoimmune or idiopathic in nature and is present in 9% cases of insulin deficiency. T1DM is primarily caused by genetic factors, environmental factors, and disorder of the immune regulatory mechanism. A combination of all these three factors causes autoimmune disease, which may ultimately result in the destruction of pancreatic beta cells leading to hyperglycemia, ketoacidosis and potentially death, if not treated with insulin. Prediabetes is the phase before the onset of T1DM, which provides a window of opportunity for early intervention. All available interventions including steroids, immunosuppressants, and cyclosporins can be possibly applied during the prediabetes phase. The treatment goals for T1DM are simple and include maintaining near normal blood glucose levels and avoiding long-term complications, which is a constant juggle between insulin and maintaining an appropriate lifestyle. The Indian Council of Medical Research funded Registry of People with diabetes in India with young age at onset (YDR) was started in the year 2006 with 10 collaborating centres across India. This registry is focusing on to provide an overview of diabetes in the young.

Acute Poisonings from Synthetic Cannabinoids - 50 U.S. Toxicology Investigators Consortium Registry Sites, 2010-2015.

PubMed

Riederer, Anne M; Campleman, Sharan L; Carlson, Robert G; Boyer, Edward W; Manini, Alex F; Wax, Paul M; Brent, Jeffrey A

2016-07-15

Recent reports suggest that acute intoxications by synthetic cannabinoids are increasing in the United States (1,2). Synthetic cannabinoids, which were research compounds in the 1980s, are now produced overseas; the first shipment recognized to contain synthetic cannabinoids was seized at a U.S. border in 2008 (3). Fifteen synthetic cannabinoids are Schedule I controlled substances (3), but enforcement is hampered by the continual introduction of new chemical compounds (1,3). Studies of synthetic cannabinoids indicate higher cannabinoid receptor binding affinities, effects two to 100 times more potent than Δ(9)-tetrahydrocannabinol (the principal psychoactive constituent of cannabis), noncannabinoid receptor binding, and genotoxicity (4,5). Acute synthetic cannabinoid exposure reportedly causes a range of mild to severe neuropsychiatric, cardiovascular, renal, and other effects (4,6,7); chronic use might lead to psychosis (6,8). During 2010-2015, physicians in the Toxicology Investigators Consortium (ToxIC) treated 456 patients for synthetic cannabinoid intoxications; 277 of the 456 patients reported synthetic cannabinoids as the sole toxicologic agent. Among these 277 patients, the most common clinical signs of intoxication were neurologic (agitation, central nervous system depression/coma, and delirium/toxic psychosis). Relative to all cases logged by 50 different sites in the ToxIC Case Registry, there was a statistically significant association between reporting year and the annual proportion of synthetic cannabinoid cases. In 2015, reported cases of synthetic cannabinoid intoxication increased at several ToxIC sites, corroborating reported upward trends in the numbers of such cases (1,2) and underscoring the need for prevention.