Suicide and violent deaths in survivors of cancer in childhood, adolescence and young adulthood-A national cohort study.

PubMed

Gunnes, Maria W; Lie, Rolv T; Bjørge, Tone; Ghaderi, Sara; Syse, Astri; Ruud, Ellen; Wesenberg, Finn; Moster, Dag

2017-02-01

Suicide risk in adult cancer patients is found to be elevated, but limited information exists regarding risks of suicide and non-suicidal violent deaths when diagnosed with cancer in young age. We investigate suicide and violent deaths in a national cohort including individuals diagnosed with cancer before age 25. Through the linkage of different national registries (Cancer Registry of Norway, Norwegian Causes of Death Registry and the National Registry) a cohort of all live births in Norway during 1965-1985 was defined and followed up through 2008. Individuals diagnosed with cancer before age 25 and the cancer-free references were compared using an extended Cox proportional hazard regression model. The cohort comprised 1,218,013 individuals, including 5,440 diagnosed with cancer before age 25. We identified 24 suicides and 14 non-suicidal violent deaths in the cancer group. The hazard ratio (HR) of suicide in the cancer group was 2.5 (95% confidence interval (CI) 1.7-3.8), and was increased both when diagnosed with cancer in childhood (0-14 years of age); HR = 2.3 (95% CI: 1.2-4.6), and during adolescence/young adulthood (15-24 years); HR = 2.6 (95% CI: 1.5-4.2). Survivors of bone/soft tissue sarcomas, CNS tumors and testicular cancer were at particular risk. The risk of non-suicidal violent death was not increased in the cancer survivors (HR = 1.0; 95% CI: 0.6-1.7). Although based on small numbers and the absolute risk of suicide being low, these are novel findings with important implications for establishing adequate follow-up including suicide prevention strategies for young cancer survivors. © 2016 UICC.

The National Film Registry: Acquiring Our Film Heritage.

ERIC Educational Resources Information Center

Ziegler, Roy A.

The National Film Registry, which is primarily a designated list of films to be preserved by the Library of Congress, is also a valuable tool for selecting "films that are culturally, historically, and aesthetically significant." Following a brief discussion of the history and selection process of the National Film Registry, Southeast…

Respiratory diseases registries in the national registry of rare diseases.

PubMed

Lara Gallego, Beatriz; Abaitua Borda, Ignacio; Galán Gil, Genaro; Castillo Villegas, Diego; Casanova Espinosa, Álvaro; Cano Jiménez, Esteban; Ojanguren Arranz, Iñigo; Posada de la Paz, Manuel

2014-09-01

This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitrypsin deficiency, idiopathic tracheal stenosis, adult pulmonary Langerhans' cell histiocytosis, lymphangioleiomyomatosis, alveolar proteinosis, and sarcoidosis. Copyright © 2013 SEPAR. Published by Elsevier Espana. All rights reserved.

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 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

Comparison of cause of death between anzdata and the australian national death index.

PubMed

Sypek, Matthew P; Dansie, Kathryn B; Clayton, Phil; Webster, Angela C; McDonald, Stephen

2018-03-01

To understand the differences in how cause of death for patients receiving renal replacement therapy in Australia is recorded in The Australian and New Zealand Dialysis and Transplant Registry (ANZDATA) compared to the National Death Index (NDI). Data linkage was performed between ANZDATA and NDI for all deaths in the period 1980-2013. Cause of death was classified according to ICD-10 chapter. Overall and chapter specific agreement were assessed using the Kappa statistic. Descriptive analysis was used to explore differences where there was disagreement on primary cause of death. The analysis cohort included 28,675 patients. Ninety five percent of ANZDATA reported deaths fell within +/- 3 days of the date recorded by NDI. Circulatory death was the most common cause of death in both databases (ANZDATA 48%, NDI 32%). Overall agreement at ICD chapter level of primary cause was poor (36%, kappa 0.22). Agreement was best for malignancy (kappa 0.71). When there was disagreement on primary cause of death these were most commonly coded as genitourinary (35%) and endocrine (25.0%) in NDI, and circulatory (39%) and withdrawal (24%) in ANZDATA. Sixty-nine percent of patients had a renal related cause documented as either primary or a contributing cause of death in the NDI. There is poor agreement in primary cause of death between ANZDATA and NDI which is in part explained by the absence of diabetes and renal failure as causes of death in ANZDATA and the absence of 'withdrawal' in NDI. These differences should be appreciated when interpreting epidemiological data on cause of death in the Australian end stage kidney disease population. This article is protected by copyright. All rights reserved.

Evaluating the completeness of the national ALS registry, United States.

PubMed

Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul

2018-02-01

Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.

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.

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

Recurrence of perinatal death in Northern Tanzania: a registry based cohort study.

PubMed

Mahande, Michael J; Daltveit, Anne K; Mmbaga, Blandina T; Obure, Joseph; Masenga, Gileard; Manongi, Rachel; Lie, Rolv T

2013-08-29

Perinatal mortality is known to be high in Sub-Saharan Africa. Some women may carry a particularly high risk which would be reflected in a high recurrence risk. We aim to estimate the recurrence risk of perinatal death using data from a hospital in Northern Tanzania. We constructed a cohort study using data from the hospital based KCMC Medical Birth Registry. Women who delivered a singleton for the first time at the hospital between 2000 and 2008 were followed in the registry for subsequent deliveries up to 2010 and 3,909 women were identified with at least one more delivery within the follow-up period. Recurrence risk of perinatal death was estimated in multivariate models analysis while adjusting for confounders and accounting for correlation between births from the same mother. The recurrence risk of perinatal death for women who had lost a previous baby was 9.1%. This amounted to a relative risk of 3.2 (95% CI: 2.2 - 4.7) compared to the much lower risk of 2.8% for women who had had a surviving baby. Recurrence contributed 21.2% (31/146) of perinatal deaths in subsequent pregnancies. Preeclampsia, placental abruption, placenta previa, induced labor, preterm delivery and low birth weight in a previous delivery with a surviving baby were also associated with increased perinatal mortality in the next pregnancy. Some women in Tanzanian who suffer a perinatal loss in one pregnancy are at a particularly high risk of also losing the baby of a subsequent pregnancy. Strategies of perinatal death prevention that target pregnant women who are particularly vulnerable or already have experienced a perinatal loss should be considered in future research.

Survival and predictors of death among primary immunodeficient patients: a registry-based study.

PubMed

Al-Herz, Waleed; Moussa, Mohamed A A

2012-06-01

The aims of this study were to investigate survival among patients with primary immunodeficiency disorders (PID) in Kuwait and to determine whether certain variables were associated with increased risk of death. The data of 176 patients (98 males and 78 females) were extracted from the Kuwait National Primary Immunodeficiency Disorders Registry and the observation period was from January 2004 to July 2011. The distribution of the reported patients was combined T- and B-cell immunodeficiencies (30.1%), predominantly antibody immunodeficiency (19.9%), other well-defined immunodeficiencies (25%), diseases of immune dysregulation (14.8%), congenital defects of phagocyte number, function or both (6.25%), and complement deficiencies (4.0%). In a total of 619.1 patient-years at risk, 48 patients died (mortality incidence rate 77.53 per 1,000 person-years). The overall survival in the studied cohort was 72.7% (72.4% for males and 73.1% for females). The most common cause of death was sepsis (46%) followed by pneumonia (29%). The probabilities that a patient survived 2, 4, and 6 years after onset of symptoms were 76%, 73%, and 69%, respectively. The variables that were found to be predictors for death are parental consanguinity, sepsis, adenovirus and CMV infections, failure to thrive, PID category, and onset age <6 months. Patients with PID have decreased probabilities of survival that are variable between PID categories. Early diagnosis and aggressive therapeutic interventions specifically of patients with history of the variables associated with increased risk of death may help increase their chance of survival.

Cardiovascular deaths in children: general overview from the National Center for the Review and Prevention of Child Deaths.

PubMed

Vetter, Victoria L; Covington, Theresa M; Dugan, Noreen P; Haley, Danielle Main; Dykstra, Heather; Overpeck, Mary; Iyer, V Ramesh; Shults, Justine

2015-03-01

Cardiovascular conditions rank sixth in causes of death in 1- to 19-year-olds. Our study is the first analysis of the cardiovascular death data set from the National Center for the Review and Prevention of Child Deaths, which provides the only systematic collection of cardiovascular deaths in children. We developed an analytical data set from the National Center for the Review and Prevention of Child Deaths database for cardiovascular deaths in children 0 to 21 years old, reviewing 1,098 cases from 2005 to 2009 in 16 states who agreed to participate. Cardiovascular cases were aged 4.8 ± 6.6 years; 55.3%, ≤1 year; 24.6%, ≥10 years; male, 58%; white, 70.5%; black, 22.3%; Hispanic, 19.5%. Prior conditions were present in 48.5%: congenital heart disease, 23%; cardiomyopathies, 4.6%; arrhythmia, 1.7%; and congestive heart failure, 1.6%. Deaths occurred most frequently in urban settings, 49.2%; and in the hospital, 40.4%; home, 26.1%; or at school/work/sports, 4.8%. Emergency medical services were not evenly distributed with differences by age, race, ethnicity, and area. Autopsies (40.4%) occurred more often in those >10 years old (odds ratio [OR] 2.9), blacks (OR 1.6), or in those who died at school/work/sports (OR 3.9). The most common cardiovascular causes of death included congenital heart disease, 40.8%; arrhythmias, 27.1%; cardiomyopathy, 11.8%; myocarditis, 4.6%; congestive heart failure, 3.6%; and coronary artery anomalies, 2.2%. Our study identified differences in causes and frequencies of cardiovascular deaths by age, race, and ethnicity. Prevention of death may be impacted by knowledge of prior conditions, emergency plans, automated external defibrillator programs, bystander cardiopulmonary resuscitation education, and by a registry for all cardiovascular deaths in children. Copyright © 2014 Elsevier Inc. All rights reserved.

Comparative study on the National Renal Disease Registry in America, England and Iran.

PubMed

Ajami, Sima; Askarianzadeh, Mahdi; Saghaeiannejad-Isfahani, Sakineh; Mortazavi, Mojgan; Ehteshami, Asghar

2014-01-01

A disease registry is a database that includes information about people diagnosed with specific types of diseases. The registry collects information that can be used for capturing, managing, and organizing specific information for patients. The aim of this study was to identify and compare the National Renal Disease Registry (NRDR) in selected countries including the United States, United Kingdom, and Iran. Retrieval of data of the NRDR performed through scholars responsible in related agencies, including the Ministry of Health and Medical Education, and Renal Disease charity, and data registries in the United States, United Kingdom, and Iran. This research was an applied and descriptive, comparative study. The study population consisted of the National Renal Disease Registry of the selected countries including the United States, United Kingdom, and Iran, from which data were collected using forms that were designed according to the study objectives. Sources of data were researchers, scholars responsible in related agencies, including the Ministry of Health and Medical Education, and Renal Disease charity, data registries, articles, books, journals, databases, websites, and related documents. Data were gathered through phone, e-mail, study, observation, and interview. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. There is no NRDR in Iran to report the short- and long-term results of renal disease. Most of the renal transplant teams report their own results as single-center experiences. America and Britain have pre-eminent national registry of renal disease, compared to other countries. The Iranian Society of Nephrology should be actively involved to create a National Renal Registry in Iran. The registry should have representatives from the universities, government, armed forces, and private sectors. Researchers proposed

Inception of a national multidisciplinary registry for stereotactic radiosurgery.

PubMed

Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

2016-01-01

Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway.

Developing a national quality registry for hand surgery: challenges and opportunities

PubMed Central

Arner, Marianne

2016-01-01

The Scandinavian National Healthcare Quality Registries (NQRs) have brought about considerable improvements since their introduction in the 1970s. One such registry – HAKIR (‘hand surgery’) – was established in 2010 and was likely the first NQR for hand surgery. Patient-reported outcome and reoperations due to post-operative complications are registered in HAKIR, as well as hand function in selected groups of surgical procedures. Creating simple logistics for collecting data and careful planning are important factors when establishing a new NQR. Continuous surveillance of data validity and coverage are crucial for success. With perseverance, large databases for clinical research can be created, along with the establishment of national multi-professional collaboration in healthcare improvement work. Cite this article: Arner, M. Developing a national quality registry for hand surgery: challenges and opportunities. EFORT Open Rev 2016;1:100-106. DOI: 10.1302/2058-5241.1.000045. PMID:28461935

National Dyslipidemia Registry of the Spanish Arteriosclerosis Society: Current status.

PubMed

Pérez-Calahorra, Sofía; Sánchez-Hernández, Rosa M; Plana, Núria; Valdivielso, Pedro; Civeira, Fernando

Clinical registries are a very effective tool to verify the usual clinical practice, to compare clinical strategies and to improve the knowledge of diagnostic and therapeutic new procedures. The National Registry of Dyslipemias of the Spanish Society of Arteriosclerosis (SEA) is an on-line, retrospective and prospective database where the different Spanish lipid units accredited by the SEA introduce data from patients with disorders of lipid metabolism. The registry was created in 2013, and since then clinical, analytical, genetic and evolutionary data of 4,449 patients have been introduced until June 2017. In the last year the registry has given rise to a considerable number of international publications and there are several more in progress. An ambitious incentive plan for inclusion of patients has been initiated to get the SEA registry as a global reference that helps to improve the knowledge and clinical management of these patients. From the coordinating group of the registry we encourage all SEA partners to collaborate in the multiple forms that the registry allows, and to make it an international scientific reference. Copyright © 2017. Publicado por Elsevier España, S.L.U.

36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 36 Parks, Forests, and Public Property 3 2014-07-01 2014-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in the...

36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 36 Parks, Forests, and Public Property 3 2011-07-01 2011-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in the...

36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 36 Parks, Forests, and Public Property 3 2012-07-01 2012-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in the...

36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in the...

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.

Assessing the utility of cancer-registry-processed cause of death in calculating cancer-specific survival.

PubMed

Hu, Chung-Yuan; Xing, Yan; Cormier, Janice N; Chang, George J

2013-05-15

Cancer registries use algorithms to process cause of death (COD) data from death certificates, but uncertainties remain regarding the accuracy and utility of those data in calculating cancer-specific survival (CSS). Because it is impractical to reconfirm the COD through meticulous review of the primary medical records, the observed cancer deaths could be compared with the number of attributed deaths, as estimated by using a relative survival (RS) approach, to determine utility in CSS estimation. Six major cancer types were evaluated using Surveillance, Epidemiology, and End Results (SEER) data (1988-1999 cohort). The COD utility was quantified by using the observed-to-expected ratio (O/E ratio) approach, which was calculated as the SEER-documented observed number of cancer-specific deaths divided by the number of expected deaths attributed to the malignancies as estimated using a RS approach. Favorable utility would have an O/E ratio close to 1. In total, 338,445 patients were identified; and their O/E ratios were 0.97, 0.98, 0.90, 1.07, 1.02, and 0.92 for breast, colorectal, lung, melanoma, prostate, and pancreas cancer, respectively. O/E ratios varied slightly with patients' age, race, and tumor stage, but not by sex. CSS for patients with lung cancer appeared to be overestimated considerably. Patients with multiple cancer diagnoses had poor O/E ratios compared with those who had only 1 cancer. The utility of COD in calculating CSS depended variously on the risk of cancer-related mortality and nontumor factors. However, the impact of this variation on CSS generally was small. The current results indicated that the COD assigned by cancer registries has acceptable validity, and CSS is considered an acceptable surrogate for RS in most circumstances. Copyright © 2013 American Cancer Society.

Great Valley Riparian Habitats and the National Registry of Natural Landmarks

Treesearch

Robert F. Holland; Cynthia L. Roye

1989-01-01

The National Registry of Natural Landmarks is a program established by the National Park Service that seeks to recognize nationally significant examples of the Nation's natural history. Nearly 100 Great Valley riparian sites were evaluated using Park Service criteria. Three sites illustrative of the range of this biotic theme were recommended to the National Park...

Causes of Death According to Death Certificates in Individuals with Dementia: A Cohort from the Swedish Dementia Registry.

PubMed

Garcia-Ptacek, Sara; Kåreholt, Ingemar; Cermakova, Pavla; Rizzuto, Debora; Religa, Dorota; Eriksdotter, Maria

2016-11-01

The causes of death in dementia are not established, particularly in rarer dementias. The aim of this study is to calculate risk of death from specific causes for a broader spectrum of dementia diagnoses. Cohort study. Swedish Dementia Registry (SveDem), 2007-2012. Individuals with incident dementia registered in SveDem (N = 28,609); median follow-up 741 days. Observed deaths were 5,368 (19%). Information on number of deaths and causes of mortality was obtained from death certificates. Odds ratios for the presence of dementia on death certificates were calculated. Hazard ratios (HRs) and 95% confidence intervals (CIs) were calculated using Cox hazards regression for cause-specific mortality, using Alzheimer's dementia (AD) as reference. Hazard ratios for death for each specific cause of death were compared with hazard ratios of death from all causes (P-values from t-tests). The most frequent underlying cause of death in this cohort was cardiovascular (37%), followed by dementia (30%). Dementia and cardiovascular causes appeared as main or contributory causes on 63% of certificates, followed by respiratory (26%). Dementia was mentioned less in vascular dementia (VaD; 57%). Compared to AD, cardiovascular mortality was higher in individuals with VaD than in those with AD (HR = 1.82, 95% CI = 1.64-2.02). Respiratory death was higher in individuals with Lewy body dementia (LBD, including Parkinson's disease dementia and dementia with Lewy bodies, HR = 2.16, 95% CI = 1.71-2.71), and the risk of respiratory death was higher than expected from the risk for all-cause mortality. Participants with frontotemporal dementia were more likely to die from external causes of death than those with AD (HR = 2.86, 95% CI = 1.53-5.32). Dementia is underreported on death certificates as main and contributory causes. Individuals with LBD had a higher risk of respiratory death than those with AD. © 2016 The Authors. The Journal of the American Geriatrics Society published by Wiley

Using cancer registries to assess the accuracy of primary liver or intrahepatic bile duct cancer as the underlying cause of death, 1999-2010.

PubMed

Polednak, Anthony P

2013-01-01

Inaccuracies in primary liver cancer (ie, excluding intrahepatic bile duct [IHBD]) or IHBD cancer as the underlying cause of death on the death certificate vs the cancer site in a cancer registry should be considered in surveillance of mortality rates in the population. Concordance between cancer site on the death record (1999-2010) and diagnosis (1973-2010) in the database for 9 cancer registries of the Surveillance, Epidemiology, and End Results (SEER) Program was examined for decedents with only 1 cancer recorded. Overreporting of deaths coded to liver cancer (ie, lack of confirmation in SEER) was largely balanced by underreporting (ie, a cancer site other than liver cancer in SEER). For IHBD cancer, overreporting was much more frequent than underreporting. Using modified rates, based on the most accurate numerators available, had little impact on trends for liver cancer in the SEER population, which were similar to trends for the entire US population based on routine statistics. An increase in the death rate for IHBD cancer, however, was no longer evident after modification. The findings support the use of routine data on underlying cause of death for surveillance of trends in death rates for liver cancer but not for IHBD cancer. Additional population-based cancer registries could potentially be used for surveillance of recent and future trends in mortality rates from these cancers.

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

PubMed

Tangka, Florence K L; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K; Trebino, Diana; Babcock, Frances; Ewing, Jean

2016-01-01

The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

36 CFR § 704.1 - Films selected for inclusion in the National Film Registry.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 36 Parks, Forests, and Public Property 3 2013-07-01 2012-07-01 true Films selected for inclusion in the National Film Registry. § 704.1 Section § 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

Validity of cancer diagnosis in the National Health Insurance database compared with the linked National Cancer Registry in Taiwan.

PubMed

Kao, Wei-Heng; Hong, Ji-Hong; See, Lai-Chu; Yu, Huang-Ping; Hsu, Jun-Te; Chou, I-Jun; Chou, Wen-Chi; Chiou, Meng-Jiun; Wang, Chun-Chieh; Kuo, Chang-Fu

2017-08-16

We aimed to evaluate the validity of cancer diagnosis in the National Health Insurance (NHI) database, which has routinely collected the health information of almost the entire Taiwanese population since 1995, compared with the Taiwan National Cancer Registry (NCR). There were 26,542,445 active participants registered in the NHI database between 2001 and 2012. National Cancer Registry and NHI database records were compared for cancer diagnosis; date of cancer diagnosis; and 1, 2, and 5 year survival. In addition, the 10 leading causes of cancer deaths in Taiwan were analyzed. There were 908,986 cancer diagnoses in NCR and NHI database and 782,775 (86.1%) in both, with 53,192 (5.9%) in the NHI database only and 73,019 (8.0%) in the NCR only. The positive predictive value of the NHI database cancer diagnoses was 94% for all cancers; the positive predictive value of the 10 specific cancers ranged from 95% (lung cancer) to 82% (cervical cancer). The date of diagnosis in the NHI database was generally delayed by a median of 15 days (interquartile range 8-18) compared with the NCR. The 1, 2, and 5 year survival rates were 71.21%, 60.85%, and 47.44% using the NHI database and were 71.18%, 60.17%, and 46.09% using NCR data. Recording of cancer diagnoses and survival estimates based on these diagnosis codes in the NHI database are generally consistent with the NCR. Studies using NHI database data must pay careful attention to eligibility and record linkage; use of both sources is recommended. Copyright © 2017 John Wiley & Sons, Ltd.

The natural history of Leydig cell testicular tumours: an analysis of the National Cancer Registry.

PubMed

Nason, G J; Redmond, E J; Considine, S W; Omer, S I; Power, D; Sweeney, P

2018-05-01

Leydig cell tumour (LCT) of the testis is a rare histological subtype of stromal tumours, accounting for 1 to 3% of testicular neoplasms. The natural history of LCT is poorly understood. The aim of this study was to assess the incidence and natural history of Leydig cell tumours (LCT) of the testes. A search of the National Cancer Registry of Ireland database was performed regarding Leydig cell testicular tumours. Recurrence free survival (RFS) and disease-specific survival (DSS) were analysed. Between 1994 and 2013, 2755 new cases of testicular cancer were diagnosed in Ireland. Of these, 22 (0.79%) were Leydig cell tumours. Nineteen were invasive (stage T1) and three were in situ (stage Tis). One patient developed a local recurrence following an organ preserving procedure and underwent a completion orchidectomy 107 days after initial diagnosis. No further treatment was required. There have been no disease-specific deaths. The 1-, 3- and 5-year overall survival (OS) rates were 95.5, 88.2 and 73.3%, respectively. The 5-year disease-specific survival (DSS) was 100% and the 5-year recurrence free survival (RFS) was 93.3%. From the National Cancer Registry, LCT has been shown to be a rare subtype of testicular tumour. Due to the relatively favourable natural history, it may be possible to tailor less aggressive surveillance regimens in these patients.

Outcome of Kidney Transplantation From Donor After Cardiac Death: Reanalysis of the US Mycophenolic Renal Transplant Registry.

PubMed

Zhu, D; McCague, K; Lin, W; Rong, R; Xu, M; Chan, L; Zhu, T

2018-06-01

Kidney transplantation is limited by the shortage of donor kidneys. Donation after cardiac death (DCD) has been explored to alleviate this problem. To better understand the outcome of DCD kidney transplantation, we reanalyzed the Mycophenolic Renal Transplant (MORE) Registry. We compared delayed graft function (DGF), biopsy-proved acute rejection (BPAR), graft loss, and patient death between DCD and donation after brain death (DBD) kidney transplantations. Recipients were further stratified into depleting and nondepleting induction groups for exploratory analysis. There were 548 patients who received kidney transplants from deceased donor in the MORE Registry. Among them, 133 received grafts from DCD donors and 415 received from DBD donors. The incidence of DGF was 29.4% and 23.5% in the DCD group and the DBD group, respectively (P = .1812), and the incidence of BPAR at 12 months was 9.0% and 9.9% respectively (P = .7713). The 1-year graft loss rate in the DCD group was higher than that in the DBD group (7.5% vs 3.1%, P = .0283), and the 4-year graft loss rate and patient death rate were not significantly different between the 2 groups. The DCD kidney transplant group had acceptable short-term outcomes and good long-term outcomes as compared with the DBD kidney transplant group. Copyright © 2018 Elsevier Inc. All rights reserved.

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries

PubMed Central

Tangka, Florence K. L.; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K.; Trebino, Diana; Babcock, Frances; Ewing, Jean

2016-01-01

Context The Centers for Disease Control and Prevention evaluated the economics of the National Program of Cancer Registries to provide the Centers for Disease Control and Prevention, the registries, and policy makers with the economic evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. Objectives To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries–funded central cancer registries. Methods We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries–funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. Results The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Conclusions Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of

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.

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.

In-Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets.

PubMed

Spector, Logan G; Menk, Jeremiah S; Vinocur, Jeffrey M; Oster, Matthew E; Harvey, Brian A; St Louis, James D; Moller, James; Kochilas, Lazaros K

2016-08-09

The long-term outcomes of patients undergoing interventions for congenital heart disease (CHD) remain largely unknown. We linked the Pediatric Cardiac Care Consortium (PCCC) with the National Death Index (NDI) and the United Network for Organ Sharing Dataset (UNOS) registries to study mortality and transplant occurring up to 32 years postintervention. The objective of the current analysis was to determine the sensitivity of this linkage in identifying patients who are known to have died or undergone heart transplant. We used direct identifiers from 59 324 subjects registered in the PCCC between 1982 and 2003 to test for completeness of case ascertainment of subjects with known vital and heart transplant status by linkage with the NDI and UNOS registries. Of the 4612 in-hospital deaths, 3873 were identified by the NDI as "true" matches for a sensitivity of 84.0% (95% CI, 82.9-85.0). There was no difference in sensitivity across 25 congenital cardiovascular conditions after adjustment for age, sex, race, presence of first name, death year, and residence at death. Of 455 known heart transplants in the PCCC, there were 408 matches in the UNOS registry, for a sensitivity of 89.7% (95% CI, 86.9-92.3). An additional 4851 deaths and 363 transplants that occurred outside the PCCC were identified through 2014. The linkage of the PCCC with the NDI and UNOS national registries is feasible with a satisfactory sensitivity. This linkage provides a conservative estimate of the long-term death and heart transplant events in this cohort. © 2016 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley Blackwell.

36 CFR 7.26 - Death Valley National Monument.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 36 Parks, Forests, and Public Property 1 2010-07-01 2010-07-01 false Death Valley National... INTERIOR SPECIAL REGULATIONS, AREAS OF THE NATIONAL PARK SYSTEM § 7.26 Death Valley National Monument. (a) Mining. Mining in Death Valley National Monument is subject to the following regulations, which are...

76 FR 14366 - National Registry of Certified Medical Examiners

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-16

... [Docket No. FMCSA-2008-0363] RIN 2126-AA97 National Registry of Certified Medical Examiners AGENCY... Certified Medical Examiners (NRCME) published on December 1, 2008. In the comments on the NPRM, a commenter inquired as to what a motor carrier had to do to verify that a medical examiner's certificate had been...

75 FR 65629 - Modification of the Annual National Registry Fee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-10-26

... FEDERAL FINANCIAL INSTITUTIONS EXAMINATION COUNCIL [Docket No. AS10-7] Modification of the Annual National Registry Fee AGENCY: Appraisal Subcommittee (ASC) of the Federal Financial Institutions... Financial Institutions Reform, Recovery and Enforcement Act of 1989 (Title XI), as amended, requires the ASC...

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.

Burden of Rotavirus Disease in Norway: Using National Registries for Public Health Research.

PubMed

Bruun, Tone; Salamanca, Beatriz Valcarcel; Bekkevold, Terese; Vainio, Kirsti; Gibory, Moustafa; Haugstad, Kirsti Egge; Rojahn, Astrid; Jakobsen, Kirsti; Størvold, Gunnar; Lunde, Anette; Størdal, Ketil; Kanestrøm, Anita; Eidem, Magnhild Owesen; Døllner, Henrik; Skanke, Lars Høsøien; Nordbø, Svein Arne; Sivertsen, Heidi Christin; Gilje, Ann Marit; Haarr, Elisebet; Flem, Elmira

2016-04-01

Norway introduced routine rotavirus immunization for all children born on or after September 1, 2014. We estimated the healthcare burden of all-cause gastroenteritis and rotavirus disease in children <5 years old to establish the prevaccine baseline and support the ongoing immunization program. We examined national registry data on gastroenteritis-associated primary care consultations and hospitalizations for 2009-2013 and data on all deaths in children <5 years old reported during 2000-2013. We also established rotavirus hospital surveillance from February 2014 through January 2015. Before vaccine introduction, 114.5 cases per 1000 children <5 years old were treated in primary care and 11.8 children per 1000 were hospitalized with gastroenteritis annually. During hospital surveillance, rotavirus was detected in 65% (95% confidence interval: 60-70) of inpatient gastroenteritis cases. We estimated that 4.0 inpatient and 2.3 outpatient cases per 1000 children were seen in hospital with rotavirus disease annually, suggesting that 1 in 32 children was hospitalized by age 5. Additional 30.6 rotavirus cases per 1000 children consulted primary care annually or 1 in every 7 children by the age of 5 years. Rotavirus-associated mortality was estimated at 0.17 deaths per 100,000 children <5 years old, corresponding to 1 death every second year. Rotavirus remains the primary cause of severe gastroenteritis in children in Norway. The unique population-based registers, in combination with an established rotavirus surveillance platform, provide a well-suited setting to evaluate the impact of rotavirus vaccination.

A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities.

PubMed

Beukelman, Timothy; Anink, Janneke; Berntson, Lillemor; Duffy, Ciaran; Ellis, Justine A; Glerup, Mia; Guzman, Jaime; Horneff, Gerd; Kearsley-Fleet, Lianne; Klein, Ariane; Klotsche, Jens; Magnusson, Bo; Minden, Kirsten; Munro, Jane E; Niewerth, Martina; Nordal, Ellen; Ruperto, Nicolino; Santos, Maria Jose; Schanberg, Laura E; Thomson, Wendy; van Suijlekom-Smit, Lisette; Wulffraat, Nico; Hyrich, Kimme

2017-04-19

To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Factors for short-term outcomes in patients with a minor stroke: results from China National Stroke Registry.

PubMed

Wu, Lingyun; Wang, Anxin; Wang, Xianwei; Zhao, Xingquan; Wang, Chunxue; Liu, Liping; Zheng, Huaguang; Wang, Yongjun; Cao, Yibin; Wang, Yilong

2015-12-09

Stroke recurrence and disability in patients with a minor stroke is one of the most depressing medical situations. In this study, we aimed to identify which factors were associated with adverse outcomes of a minor stroke. The China National Stroke Registry (CNSR) is a nationwide prospective registry for patients presented to hospitals with acute cerebrovascular events between September 2007 and August 2008. The 3-month follow-up was completed in 4669 patients with a minor stroke defined as the initial neurological severity lower than 4 in the National Institutes of Health Stroke Scale (NIHSS). Multivariate model was used to determine the association between risk factors and clinical outcomes. Of 4669 patients with a minor stroke during 3-month follow-up, 459 (9.8 %) patients experienced recurrent stroke, 679 (14.5 %) had stroke disability and 168 (3.6 %) died. Multivariate model identified hypertension, diabetes mellitus, atrial fibrillation, coronary heart disease and previous stroke as independent predictors for the recurrent stroke. Age, diabetes mellitus, atrial fibrillation, previous stroke and time from onset to admission < 24 h were independent predictors for stroke disability. The independent predictors for the all-caused death were age, atrial fibrillation, and coronary heart disease. The short-term risk of poor clinical outcome in Chinese patients with a minor stroke was substantial. Therefore, patients with a minor stroke should be given expeditious assessment and urgent aggressive intervention.

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

International Society for Heart and Lung Transplantation Donation After Circulatory Death Registry Report.

PubMed

Cypel, Marcelo; Levvey, Bronwyn; Van Raemdonck, Dirk; Erasmus, Michiel; Dark, John; Love, Robert; Mason, David; Glanville, Allan R; Chambers, Daniel; Edwards, Leah B; Stehlik, Josef; Hertz, Marshall; Whitson, Brian A; Yusen, Roger D; Puri, Varun; Hopkins, Peter; Snell, Greg; Keshavjee, Shaf

2015-10-01

The objective of this study was to review the international experience in lung transplantation using lung donation after circulatory death (DCD). In this retrospective study, data from the International Society for Heart and Lung Transplantation (ISHLT) DCD Registry were analyzed. The study cohort included DCD lung transplants performed between January 2003 and June 2013, and reported to the ISHLT DCD Registry as of April 2014. The participating institutions included 10 centers in North America, Europe and Australia. The control group was a cohort of lung recipients transplanted using brain-dead donors (DBDs) during the same study period. The primary end-point was survival after lung transplantation. There were 306 transplants performed using DCD donors and 3,992 transplants using DBD donors during the study period. Of the DCD transplants, 94.8% were Maastricht Category III, whereas 4% were Category IV and 1.2% Category V (euthanasia). Heparin was given in 54% of the cases, donor extubation occurred in 90% of the cases, and normothermic ex vivo lung perfusion (EVLP) was used in 12%. The median time from withdrawal of life support therapy (WLST) to cardiac arrest was 15 minutes (5th to 95th percentiles of 5 to 55 minutes), and from WLST to cold flush was 33 minutes (5th to 95th percentiles of 19.5 to 79.5 minutes). Recipient age and medical diagnosis were similar in DCD and DBD groups (p = not significant [NS]). Median hospital length of stay was 18 days in DCD lung transplants and 16 days in DBD transplants (p = 0.016). Thirty-day survival was 96% in the DCD group and 97% in the DBD group. One-year survival was 89% in the DCD group and 88% in the DBD group (p = NS). Five-year survival was 61% in both groups (p = NS). The mechanism of donor death within the DCD group seemed to influence recipient early survival. The survival rates through 30 days were significantly different by donor mechanism of death (p = 0.0152). There was no significant correlation between the

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

Evaluation of a methodology to validate National Death Index retrieval results among a cohort of U.S. service members.

PubMed

Skopp, Nancy A; Smolenski, Derek J; Schwesinger, Daniel A; Johnson, Christopher J; Metzger-Abamukong, Melinda J; Reger, Mark A

2017-06-01

Accurate knowledge of the vital status of individuals is critical to the validity of mortality research. National Death Index (NDI) and NDI-Plus are comprehensive epidemiological resources for mortality ascertainment and cause of death data that require additional user validation. Currently, there is a gap in methods to guide validation of NDI search results rendered for active duty service members. The purpose of this research was to adapt and evaluate the CDC National Program of Cancer Registries (NPCR) algorithm for mortality ascertainment in a large military cohort. We adapted and applied the NPCR algorithm to a cohort of 7088 service members on active duty at the time of death at some point between 2001 and 2009. We evaluated NDI validity and NDI-Plus diagnostic agreement against the Department of Defense's Armed Forces Medical Examiner System (AFMES). The overall sensitivity of the NDI to AFMES records after the application of the NPCR algorithm was 97.1%. Diagnostic estimates of measurement agreement between the NDI-Plus and the AFMES cause of death groups were high. The NDI and NDI-Plus can be successfully used with the NPCR algorithm to identify mortality and cause of death among active duty military cohort members who die in the United States. Published by Elsevier Inc.

Positive predictive value of infective endocarditis in the Danish National Patient Registry: a validation study.

PubMed

Østergaard, Lauge; Adelborg, Kasper; Sundbøll, Jens; Pedersen, Lars; Loldrup Fosbøl, Emil; Schmidt, Morten

2018-05-30

The positive predictive value of an infective endocarditis diagnosis is approximately 80% in the Danish National Patient Registry. However, since infective endocarditis is a heterogeneous disease implying long-term intravenous treatment, we hypothesiszed that the positive predictive value varies by length of hospital stay. A total of 100 patients with first-time infective endocarditis in the Danish National Patient Registry were identified from January 2010 - December 2012 at the University hospital of Aarhus and regional hospitals of Herning and Randers. Medical records were reviewed. We calculated the positive predictive value according to admission length, and separately for patients with a cardiac implantable electronic device and a prosthetic heart valve using the Wilson score method. Among the 92 medical records available for review, the majority of the patients had admission length ⩾2 weeks. The positive predictive value increased with length of admission. In patients with admission length <2 weeks the positive predictive value was 65% while it was 90% for admission length ⩾2 weeks. The positive predictive value was 81% for patients with a cardiac implantable electronic device and 87% for patients with a prosthetic valve. The positive predictive value of the infective endocarditis diagnosis in the Danish National Patient Registry is high for patients with admission length ⩾2 weeks. Using this algorithm, the Danish National Patient Registry provides a valid source for identifying infective endocarditis for research.

Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey.

PubMed

Eldh, Ann Catrine; Wallin, Lars; Fredriksson, Mio; Vengberg, Sofie; Winblad, Ulrika; Halford, Christina; Dahlström, Tobias

2016-11-09

While national quality registries (NQRs) are suggested to provide opportunities for systematic follow-up and learning opportunities, and thus clinical improvements, features in registries and contexts triggering such processes are not fully known. This study focuses on one of the world's largest stroke registries, the Swedish NQR Riksstroke, investigating what aspects of the registry and healthcare organisations facilitate or hinder the use of registry data in clinical quality improvement. Following particular qualitative studies, we performed a quantitative survey in an exploratory sequential design. The survey, including 50 items on context, processes and the registry, was sent to managers, physicians and nurses engaged in Riksstroke in all 72 Swedish stroke units. Altogether, 242 individuals were presented with the survey; 163 responded, representing all but two units. Data were analysed descriptively and through multiple linear regression. A majority (88%) considered Riksstroke data to facilitate detection of stroke care improvement needs and acknowledged that their data motivated quality improvements (78%). The use of Riksstroke for quality improvement initiatives was associated (R 2 =0.76) with 'Colleagues' call for local results' (p=<0.001), 'Management Request of Registry data' (p=<0.001), and it was said to be 'Simple to explain the results to colleagues' (p=0.02). Using stepwise regression, 'Colleagues' call for local results' was identified as the most influential factor. Yet, while 73% reported that managers request registry data, only 39% reported that their colleagues call for the unit's Riksstroke results. While an NQR like Riksstroke demonstrates improvement needs and motivates stakeholders to make progress, local stroke care staff and managers need to engage to keep the momentum going in terms of applying registry data when planning, performing and evaluating quality initiatives. Published by the BMJ Publishing Group Limited. For permission to use

Modeling Major Adverse Outcomes of Pediatric and Adult Patients With Congenital Heart Disease Undergoing Cardiac Catheterization: Observations From the NCDR IMPACT Registry (National Cardiovascular Data Registry Improving Pediatric and Adult Congenital Treatment).

PubMed

Jayaram, Natalie; Spertus, John A; Kennedy, Kevin F; Vincent, Robert; Martin, Gerard R; Curtis, Jeptha P; Nykanen, David; Moore, Phillip M; Bergersen, Lisa

2017-11-21

Risk standardization for adverse events after congenital cardiac catheterization is needed to equitably compare patient outcomes among different hospitals as a foundation for quality improvement. The goal of this project was to develop a risk-standardization methodology to adjust for patient characteristics when comparing major adverse outcomes in the NCDR's (National Cardiovascular Data Registry) IMPACT Registry (Improving Pediatric and Adult Congenital Treatment). Between January 2011 and March 2014, 39 725 consecutive patients within IMPACT undergoing cardiac catheterization were identified. Given the heterogeneity of interventional procedures for congenital heart disease, new procedure-type risk categories were derived with empirical data and expert opinion, as were markers of hemodynamic vulnerability. A multivariable hierarchical logistic regression model to identify patient and procedural characteristics predictive of a major adverse event or death after cardiac catheterization was derived in 70% of the cohort and validated in the remaining 30%. The rate of major adverse event or death was 7.1% and 7.2% in the derivation and validation cohorts, respectively. Six procedure-type risk categories and 6 independent indicators of hemodynamic vulnerability were identified. The final risk adjustment model included procedure-type risk category, number of hemodynamic vulnerability indicators, renal insufficiency, single-ventricle physiology, and coagulation disorder. The model had good discrimination, with a C-statistic of 0.76 and 0.75 in the derivation and validation cohorts, respectively. Model calibration in the validation cohort was excellent, with a slope of 0.97 (standard error, 0.04; P value [for difference from 1] =0.53) and an intercept of 0.007 (standard error, 0.12; P value [for difference from 0] =0.95). The creation of a validated risk-standardization model for adverse outcomes after congenital cardiac catheterization can support reporting of risk

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

Defibrillator implantations for primary prevention in the United States: Inappropriate care or inadequate documentation: Insights from the National Cardiovascular Data ICD Registry.

PubMed

Kaiser, Daniel W; Tsai, Vivian; Heidenreich, Paul A; Goldstein, Mary K; Wang, Yongfei; Curtis, Jeptha; Turakhia, Mintu P

2015-10-01

Prior studies have reported that more than 20% of implantable cardioverter-defibrillator (ICD) implantations in the United States do not adhere to trial-based criteria. We sought to investigate the patient characteristics associated with not meeting the inclusion criteria of the clinical trials that have demonstrated the efficacy of primary prevention ICDs. Using data from the National Cardiovascular Data Registry's ICD Registry, we identified patients who received ICDs for primary prevention from January 2006 to December 2008. We determined whether patients met the inclusion criteria of at least 1 of the 4 ICD primary prevention trials: Multicenter Automatic Defibrillator Implantation Trial (MADIT), MADIT-II, Sudden Cardiac Death in Heart Failure Trial (SCD-HeFT), and the Multicenter Unsustained Tachycardia Trial (MUSTT). Among 150,264 patients, 86% met criteria for an ICD implantation based on trial data. The proportion of patients who did not meet trial-based criteria increased as age decreased. In multivariate analysis, the significant predictors for not meeting trial criteria included prior cardiac transplantation (odds ratio [OR] 2.1), pediatric electrophysiology operator (OR 2.0), and high-grade atrioventricular conduction disease (OR 1.4). Among National Cardiovascular Data Registry registrants receiving first-time ICDs for primary prevention, the majority met trial-based criteria. Multivariate analyses suggested that many patients who did not meet the trial-based criteria may have had clinical circumstances that warranted ICD implantation. These findings caution against the use of trial-based indications to determine site quality metrics that could penalize sites that care for younger patients. The planned incorporation of appropriate use criteria into the ICD registry may better characterize patient- and site-level quality and performance. Published by Elsevier Inc.

Clopidogrel discontinuation after acute coronary syndromes: frequency, predictors and associations with death and myocardial infarction--a hospital registry-primary care linked cohort (MINAP-GPRD).

PubMed

Boggon, Rachael; van Staa, Tjeerd P; Timmis, Adam; Hemingway, Harry; Ray, Kausik K; Begg, Alan; Emmas, Cathy; Fox, Keith A A

2011-10-01

Adherence to evidence-based treatments and its consequences after acute myocardial infarction (MI) are poorly defined. We examined the extent to which clopidogrel treatment initiated in hospital is continued in primary care; the factors predictive of clopidogrel discontinuation and the hazard of death or recurrent MI. We linked the Myocardial Ischaemia National Audit Project registry and the General Practice Research Database to examine adherence to clopidogrel in primary care among patients discharged from hospital after MI (2003-2009). Hospital Episode Statistics and national mortality data were linked, documenting all-cause mortality and non-fatal MI. Of the 7543 linked patients, 4650 were prescribed clopidogrel in primary care within 3 months of discharge. The adjusted odds of still being prescribed clopidogrel at 12 months were similar following non-ST-elevation myocardial infarction (NSTEMI) 53% (95% CI, 51-55) and ST-elevation myocardial infarction (STEMI) 54% (95% CI, 52-56), but contrast with statins: NSTEMI 84% (95% CI, 82-85) and STEMI 89% (95% CI, 87-90). Discontinuation within 12 months was more frequent in older patients [>80 vs. 40-49 years, adjusted hazard ratio (HR) 1.50 (95% CI, 1.15-1.94)] and with bleeding events [HR 1.34 (95% CI, 1.03-1.73)]. 18.15 patients per 100 person-years (95% CI, 16.83-19.58) died or experienced non-fatal MI in the first year following discharge. In patients who discontinued clopidogrel within 12 months, the adjusted HR for death or non-fatal MI was 1.45 (95% CI, 1.22-1.73) compared with untreated patients, and 2.62 (95% CI, 2.17-3.17) compared with patients persisting with clopidogrel treatment. This is the first study to use linked registries to determine persistence of clopidogrel treatment after MI in primary care. It demonstrates that discontinuation is common and associated with adverse outcomes.

Complications of Non-Operating Room Procedures: Outcomes From the National Anesthesia Clinical Outcomes Registry.

PubMed

Chang, Beverly; Kaye, Alan D; Diaz, James H; Westlake, Benjamin; Dutton, Richard P; Urman, Richard D

2015-04-07

This study examines the impact of procedural locations and types of anesthetics on patient outcomes in non-operating room anesthesia (NORA) locations. The National Anesthesia Clinical Outcomes Registry database was examined to compare OR to NORA anesthetic complications and patient demographics. The National Anesthesia Clinical Outcomes Registry database was examined for all patient procedures from 2010 to 2013. A total of 12,252,846 cases were analyzed, with 205 practices contributing information, representing 1494 facilities and 7767 physician providers. Cases were separated on the basis of procedure location, OR, or NORA. Subgroup analysis examined outcomes from specific subspecialties. Non-OR anesthesia procedures were performed on a higher percentage of patients older than 50 years (61.92% versus 55.56%, P < 0.0001). Monitored anesthesia care (MAC) (20.15%) and sedation (2.05%) were more common in NORA locations. The most common minor complications were postoperative nausea and vomiting (1.06%), inadequate pain control (1.01%), and hemodynamic instability (0.62%). The most common major complications were serious hemodynamic instability (0.10%) and upgrade of care (0.10%). There was a greater incidence of complications in cardiology and radiology locations. Overall mortality was higher in OR versus NORA (0.04% versus 0.02%, P < 0.0001). Subcategory analysis showed increased incidence of death in cardiology and radiology locations (0.05%). Non-OR anesthesia procedures have lower morbidity and mortality rates than OR procedures, contrary to some previously published studies. However, the increased complication rates in both the cardiology and radiology locations may need to be the target of future safety investigations. Providers must ensure proper monitoring of patients, and NORA locations need to be held to the same standard of care as the main operating room. Further studies need to identify at-risk patients and procedures that may predispose patients to

Registry of Hypogonadism in Men (RHYME): design of a multi-national longitudinal, observational registry of exogenous testosterone use in hypogonadal men.

PubMed

Rosen, Raymond C; Wu, Frederick C W; Behre, Hermann M; Roehrborn, Claus G; Schröder, Fritz H; Siami, Flora S; Martha, Julia F; Finn, Joseph D; Araujo, Andre B

2013-03-01

Despite the prevalence of hypogonadism (HG) and widespread use of testosterone therapy, little is known about the safety/effectiveness of long-term testosterone use. The Registry of Hypogonadism in Men (RHYME) is a multi-national patient registry assessing prostate health and other outcomes associated with testosterone treatment in men. Observational patient disease registry. RHYME is a non-interventional disease registry with longitudinal data collection on a large sample (N = 999) of well-characterized, hypogonadal men aged 18 years or older. The Registry will prospectively evaluate male patients diagnosed with HG, who have not previously been treated with testosterone therapy. Key design features include: (1) broad inclusion/exclusion criteria, (2) standardized central laboratory hormone assays, (3) independent adjudication of prostate biopsies and mortalities, (4) standard of care treatment, (5) comprehensive medical record and questionnaire data at six months and annually post-enrollment and (6) adequate statistical power for assessing prostate endpoints at 36 months. A total of 25 clinical sites in six European countries (Germany, Italy, the Netherlands, Spain, Sweden and the United Kingdom) have completed recruitment for the study. Recruitment was initiated in May 2009, and completed in December 2011. Data collection is ongoing with a minimum of two years of follow-up on all patients.

The Global Network Maternal Newborn Health Registry: a multi-national, community-based registry of pregnancy outcomes

PubMed Central

2015-01-01

Background The Global Network for Women's and Children's Health Research (Global Network) supports and conducts clinical trials in resource-limited countries by pairing foreign and U.S. investigators, with the goal of evaluating low-cost, sustainable interventions to improve the health of women and children. Accurate reporting of births, stillbirths, neonatal deaths, maternal mortality, and measures of obstetric and neonatal care is critical to efforts to discover strategies for improving pregnancy outcomes in resource-limited settings. Because most of the sites in the Global Network have weak registration within their health care systems, the Global Network developed the Maternal Newborn Health Registry (MNHR), a prospective, population-based registry of pregnancies at the Global Network sites to provide precise data on health outcomes and measures of care. Methods Pregnant women are enrolled in the MNHR if they reside in or receive healthcare in designated groups of communities within sites in the Global Network. For each woman, demographic, health characteristics and major outcomes of pregnancy are recorded. Data are recorded at enrollment, the time of delivery and at 42 days postpartum. Results From 2010 through 2013 Global Network sites were located in Argentina, Guatemala, Belgaum and Nagpur, India, Pakistan, Kenya, and Zambia. During this period, 283,496 pregnant women were enrolled in the MNHR; this number represented 98.8% of all eligible women. Delivery data were collected for 98.8% of women and 42-day follow-up data for 98.4% of those enrolled. In this supplement, there are a series of manuscripts that use data gathered through the MNHR to report outcomes of these pregnancies. Conclusions Developing public policy and improving public health in countries with poor perinatal outcomes is, in part, dependent upon understanding the outcome of every pregnancy. Because the worst pregnancy outcomes typically occur in countries with limited health registration

76 FR 57742 - National Registry of Evidence-Based Programs and Practices

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-16

... research in these areas more effectively and more rapidly into the general health care system. The National... registry undergo two independent review processes in which their (1) Quality of research and (2) readiness... presents ratings and descriptive information about the intervention. Anyone that consents to a review is...

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

[Causes of death in amyotrophic lateral sclerosis : Results from the Rhineland-Palatinate ALS registry].

PubMed

Wolf, J; Safer, A; Wöhrle, J C; Palm, F; Nix, W A; Maschke, M; Grau, A J

2017-08-01

Amyotrophic lateral sclerosis (ALS) is associated with an increased mortality. Knowledge of possible causes of death could lead to an individualization of the palliative treatment concept and result in a differentiated palliative treatment pathway. Currently, only few systematic data are available on the heterogeneity of causes of death associated with ALS. Analysis of the various causes of death in a prospective population-based German cohort of ALS patients. Analysis of data of the Rhineland-Palatinate ALS registry in which newly diagnosed patients who had been identified between October 2009 and September 2012 were prospectively enrolled and followed up at regular intervals. From this prospective cohort study the causes of death were elicited based on information provided by the attending physicians, family members and by means of death certificates registered by the regional health authorities in Rhineland-Palatinate. Out of 200 ALS patients registered 148 died between register initiation on 1 October 2009 and the end of follow-up on 30 September 2015 (78 males and 70 females, death rate 74%). The most frequent cause of death was respiratory failure as a consequence of weakness of respiratory muscles (n = 91, 61%). Less frequent causes of death were pneumonia (n = 13, 9%), terminal cachexia (n = 9, 6%) and death from cardiovascular causes including sudden death (n = 9, 6%). Cases of suicide were rare (n = 3, 2%) as were deaths due to concurrent diseases (n = 2). In 21 cases (14%) the exact cause of death could not be clarified. Differences in the causes of death only showed a tendency towards the ALS phenotype. Respiratory failure was the cause of death in all patients with a respiratory phenotype and in 78% of patients with flail arm syndrome. Despite the low number of patients (8%) with additional frontotemporal dementia (FTD) a distinct difference in causes of death between those with and without FTD could be observed. Death due to respiratory

Physical Activity Patterns in the National Weight Control Registry

PubMed Central

Catenacci, Victoria A.; Ogden, Lorraine G.; Stuht, Jennifer; Phelan, Suzanne; Wing, Rena R.; Hill, James O.; Wyatt, Holly R.

2015-01-01

Objective The National Weight Control Registry (NWCR) was established in 1993 to examine the characteristics of those who are successful at weight loss: individuals maintaining a 13.6-kg weight loss for >1 year. The size of the registry has increased substantially since the early descriptions of this group a decade ago. The purpose of this study was to describe in detail the weekly physical activity habits of NWCR members, to examine the relationship between amount of activity and demographic characteristics, and to determine if changes in activity parameters have occurred over time. Methods and Procedures Participants were 887 men and 2,796 women who enrolled in the NWCR between 1993 and 2004. Physical activity was evaluated at registry entry using the Paffenbarger Physical Activity Questionnaire. Results NWCR entrants report an average of 2,621 ± 2,252 kcal/week in physical activity. There is considerable variability in the amount of activity reported: 25.3% report <1,000 kcal/week and 34.9% report >3,000 kcal/week. Activity level on registry entry is related to the magnitude but not the duration of weight loss. The amount of activity reported by men has decreased over time while no significant change was observed in women. Changes in the types of activities most frequently reported were also observed. Discussion Overall, NWCR participants are an extremely physically active group. However, the amount of activity reported is highly variable, making it difficult to develop a single recommendation for the optimum amount of physical activity for weight loss maintenance. A better understanding of individual-specific determinants of how much activity is required for weight loss maintenance ought to be a high research priority. PMID:18223628

Prostate cancer in South Africa: pathology based national cancer registry data (1986-2006) and mortality rates (1997-2009).

PubMed

Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

2014-01-01

Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986-2006) and data on mortality (1997-2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA.

Interventional Procedures Outside of the Operating Room: Results From the National Anesthesia Clinical Outcomes Registry.

PubMed

Chang, Beverly; Kaye, Alan D; Diaz, James H; Westlake, Benjamin; Dutton, Richard P; Urman, Richard D

2018-03-01

This study examines the impact of procedural locations and types of anesthetics on patient outcomes in non-operating room anesthesia (NORA) locations. The National Anesthesia Clinical Outcomes Registry database was examined to compare OR to NORA anesthetic complications and patient demographics. The National Anesthesia Clinical Outcomes Registry database was examined for all patient procedures from 2010 to 2013. A total of 12,252,846 cases were analyzed, with 205 practices contributing information, representing 1494 facilities and 7767 physician providers. Cases were separated on the basis of procedure location, OR, or NORA. Subgroup analysis examined outcomes from specific subspecialties. NORA procedures were performed on a higher percentage of patients older than 50 years (61.92% versus 55.56%, P < 0.0001). Monitored anesthesia care (MAC) (20.15%) and sedation (2.05%) were more common in NORA locations. The most common minor complications were postoperative nausea and vomiting (1.06%), inadequate pain control (1.01%), and hemodynamic instability (0.62%). The most common major complications were serious hemodynamic instability (0.10%) and upgrade of care (0.10%). There was a greater incidence of complications in cardiology and radiology locations. Overall mortality was higher in OR versus NORA (0.04% versus 0.02%, P < 0.0001). Subcategory analysis showed increased incidence of death in cardiology and radiology locations (0.05%). NORA procedures have lower morbidity and mortality rates than OR procedures, contrary to some previously published studies. However, the increased complication rates in both the cardiology and radiology locations may need to be the target of future safety investigations. Providers must ensure proper monitoring of patients, and NORA locations need to be held to the same standard of care as the main operating room. Further studies need to identify at-risk patients and procedures that may predispose patients to complications.

Describing the linkages of the immigration, refugees and citizenship Canada permanent resident data and vital statistics death registry to Ontario's administrative health database.

PubMed

Chiu, Maria; Lebenbaum, Michael; Lam, Kelvin; Chong, Nelson; Azimaee, Mahmoud; Iron, Karey; Manuel, Doug; Guttmann, Astrid

2016-10-21

Ontario, the most populous province in Canada, has a universal healthcare system that routinely collects health administrative data on its 13 million legal residents that is used for health research. Record linkage has become a vital tool for this research by enriching this data with the Immigration, Refugees and Citizenship Canada Permanent Resident (IRCC-PR) database and the Office of the Registrar General's Vital Statistics-Death (ORG-VSD) registry. Our objectives were to estimate linkage rates and compare characteristics of individuals in the linked versus unlinked files. We used both deterministic and probabilistic linkage methods to link the IRCC-PR database (1985-2012) and ORG-VSD registry (1990-2012) to the Ontario's Registered Persons Database. Linkage rates were estimated and standardized differences were used to assess differences in socio-demographic and other characteristics between the linked and unlinked records. The overall linkage rates for the IRCC-PR database and ORG-VSD registry were 86.4 and 96.2 %, respectively. The majority (68.2 %) of the record linkages in IRCC-PR were achieved after three deterministic passes, 18.2 % were linked probabilistically, and 13.6 % were unlinked. Similarly the majority (79.8 %) of the record linkages in the ORG-VSD were linked using deterministic record linkage, 16.3 % were linked after probabilistic and manual review, and 3.9 % were unlinked. Unlinked and linked files were similar for most characteristics, such as age and marital status for IRCC-PR and sex and most causes of death for ORG-VSD. However, lower linkage rates were observed among people born in East Asia (78 %) in the IRCC-PR database and certain causes of death in the ORG-VSD registry, namely perinatal conditions (61.3 %) and congenital anomalies (81.3 %). The linkages of immigration and vital statistics data to existing population-based healthcare data in Ontario, Canada will enable many novel cross-sectional and longitudinal studies to

Using birth defects registry data to evaluate infant and childhood mortality associated with birth defects: an alternative to traditional mortality assessment using underlying cause of death statistics.

PubMed

Copeland, Glenn E; Kirby, Russell S

2007-11-01

Although birth defects are a leading cause of death in infancy and early childhood, the proportion of all deaths to children with clinically diagnosed birth defects is not well documented. The study is intended to measure the proportion of all deaths to infants and children under age 10 occurring to children with birth defects and how and why this proportion differs from the proportion of deaths due to an underlying cause of congenital anomalies using standard mortality statistics. A linked file of Michigan livebirths and deaths was combined with data from a comprehensive multisource birth defects registry of Michigan livebirths born during the years 1992 through 2000. The data were analyzed to determine the mortality rate for infants and children with birth defects and for children with no reported birth defect. Mortality risk ratios were calculated. The underlying causes of death for children with birth defects were also categorized and compared to cause- specific mortality rates for the general population. Congenital anomalies were the underlying cause of death for 17.8% of all infant deaths while infants with birth defects were 33.7% of all infant deaths in the study. Almost half of all Michigan deaths to children aged 1 to 2 were within the birth defects registry, though only 15.0% had an underlying cause of death of a congenital anomaly based upon standard mortality statistics. The mortality experience among children with birth defects was significantly higher than other children throughout the first 9 years of life, ranging from 4.6 for 5 year olds to 12.8 for children 1 to 2. Mortality risk ratios examined by cause of death for infants with birth defects were highest for other endocrine (28.1), other CNS (28.1), and heart (21.9) conditions. For children 1 through 9, the highest differential risk was seen for other perinatal conditions (39.0), other endocrine (29.7), other CNS (24.5), and heart (21.4). Childhood mortality analyses that incorporate birth

Paclitaxel-eluting versus sirolimus-eluting stents in diabetes mellitus: a report from the National Heart, Lung, and Blood Institute Dynamic Registry.

PubMed

Wolf, William M; Vlachos, Helen A; Marroquin, Oscar C; Lee, Joon S; Smith, Conrad; Anderson, William D; Schindler, John T; Holper, Elizabeth M; Abbott, J Dawn; Williams, David O; Laskey, Warren K; Kip, Kevin E; Kelsey, Sheryl F; Mulukutla, Suresh R

2010-02-01

Diabetes is a powerful predictor of adverse events in patients undergoing percutaneous coronary intervention. Drug-eluting stents reduce restenosis rates compared with bare metal stents; however, controversy remains regarding which drug-eluting stents provides greater benefit in patients with diabetes. Accordingly, we compared the safety and efficacy of sirolimus-eluting stents (SES) with paclitaxel-eluting stents (PES) among diabetic patients in a contemporary registry. Using the National Heart, Lung, and Blood Institute Dynamic Registry, we evaluated 2-year outcomes of diabetic patients undergoing percutaneous coronary interventions with SES (n=677) and PES (n=328). Clinical and demographic characteristics, including age, body mass index, insulin use, left ventricular function, and aspirin/clopidogrel use postprocedure, did not differ significantly between the groups except that PES-treated patients had a greater frequency of hypertension and hyperlipidemia. At the 2-year follow-up, no significant differences were observed between PES and SES with regard to safety or efficacy end points. PES- and SES-treated patients had similar rates of death (10.7% versus 8.2%, P=0.20), death and myocardial infarction (14.9% versus 13.6%, P=0.55), repeat revascularization (14.8% versus 17.8%, P=0.36), and stent thrombosis (1.3% versus 1.3%, P=0.95). After adjustment, no significant differences between the 2 stent types in any outcome were observed. PES and SES are equally efficacious and have similar safety profiles in diabetic patients undergoing percutaneous coronary interventions in clinical practice.

Down syndrome: national conference on patient registries, research databases, and biobanks.

PubMed

Oster-Granite, Mary Lou; Parisi, Melissa A; Abbeduto, Leonard; Berlin, Dorit S; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A; Reeves, Roger H; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R B; Maddox, Yvonne T

2011-01-01

A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. Copyright © 2011. Published by Elsevier Inc. All rights reserved.

Clopidogrel discontinuation after acute coronary syndromes: frequency, predictors and associations with death and myocardial infarction—a hospital registry-primary care linked cohort (MINAP–GPRD)

PubMed Central

Boggon, Rachael; van Staa, Tjeerd P.; Timmis, Adam; Hemingway, Harry; Ray, Kausik K.; Begg, Alan; Emmas, Cathy; Fox, Keith A.A.

2011-01-01

Aims Adherence to evidence-based treatments and its consequences after acute myocardial infarction (MI) are poorly defined. We examined the extent to which clopidogrel treatment initiated in hospital is continued in primary care; the factors predictive of clopidogrel discontinuation and the hazard of death or recurrent MI. Methods and results We linked the Myocardial Ischaemia National Audit Project registry and the General Practice Research Database to examine adherence to clopidogrel in primary care among patients discharged from hospital after MI (2003–2009). Hospital Episode Statistics and national mortality data were linked, documenting all-cause mortality and non-fatal MI. Of the 7543 linked patients, 4650 were prescribed clopidogrel in primary care within 3 months of discharge. The adjusted odds of still being prescribed clopidogrel at 12 months were similar following non-ST-elevation myocardial infarction (NSTEMI) 53% (95% CI, 51–55) and ST-elevation myocardial infarction (STEMI) 54% (95% CI, 52–56), but contrast with statins: NSTEMI 84% (95% CI, 82–85) and STEMI 89% (95% CI, 87–90). Discontinuation within 12 months was more frequent in older patients [>80 vs. 40–49 years, adjusted hazard ratio (HR) 1.50 (95% CI, 1.15–1.94)] and with bleeding events [HR 1.34 (95% CI, 1.03–1.73)]. 18.15 patients per 100 person-years (95% CI, 16.83–19.58) died or experienced non-fatal MI in the first year following discharge. In patients who discontinued clopidogrel within 12 months, the adjusted HR for death or non-fatal MI was 1.45 (95% CI, 1.22–1.73) compared with untreated patients, and 2.62 (95% CI, 2.17–3.17) compared with patients persisting with clopidogrel treatment. Conclusion This is the first study to use linked registries to determine persistence of clopidogrel treatment after MI in primary care. It demonstrates that discontinuation is common and associated with adverse outcomes. PMID:21875855

Survival and causes of death in systemic sclerosis patients: a single center registry report from Iran.

PubMed

Poormoghim, Hadi; Andalib, Elham; Jalali, Arash; Ghaderi, Afshin; Ghorbannia, Ali; Mojtabavi, Nazanin

2016-07-01

The aims of the study were to determine prognostic factors for survival and causes of death in a cohort of patients with systemic sclerosis (SSc). This was a cohort study of SSc patients in single rheumatologic center from January 1998 to August 2012. They fulfilled the American College of Rheumatology classification criteria for SSc or had calcinosis Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, telangiectasia or sine sclerosis. Causes of death were classified as SSc related and non-SSc related. Kaplan-Meier and Cox proportional hazard regression models were used in univariate and multivariate analysis to analyse survival in subgroups and determine prognostic factors of survival. The study includes 220 patients (192 female, 28 male). Out of thirty-two (14.5 %) who died, seventeen (53.1 %) deaths were SSc related and in nine (28.1 %) non-SSc-related causes, and in six (18.8 %) of patients causes of death were not defined. Overall survival rate was 92.6 % (95 % CI 87.5-95.7 %) after 5 years and 82.3 % (95 % CI 73.4-88.4 %) after 10 years. Pulmonary involvement was a major SSc-related cause of death, occurred in seven (41.1 %) patients. Cardiovascular events were leading cause of in overall death (11) 34.3 % and 6 in non-SSc-related death. Independent risk factors for mortality were age >50 at diagnosis (HR 5.10) advance pulmonary fibrosis (HR 11.5), tendon friction rub at entry (HR 6.39), arthritis (HR 3.56). In this first Middle Eastern series of SSc registry, pulmonary and cardiac involvements were the leading cause of SSc-related death.

Evaluation of data quality at the National Cancer Registry of Ukraine.

PubMed

Ryzhov, Anton; Bray, Freddie; Ferlay, Jacques; Fedorenko, Zoya; Goulak, Liudmyla; Gorokh, Yevgeniy; Soumkina, Olena; Znaor, Ariana

2018-04-01

Cancer notification has been mandatory in Ukraine since 1953, with the National Cancer Registry of Ukraine (NCRU) established in 1996. The aim of this study was to provide a comprehensive evaluation of the data quality at the NCRU. Qualitative and semi-quantitative methods were used to assess the comparability, completeness, validity and timeliness of cancer incidence data from the NCRU for the period 2002-2012. Cancer registration procedures at the NCRU are in accordance with international standards and recommendations. Semi-quantitative methods suggested the NCRU's data was reasonably complete, although decreases in age-specific incidence and mortality rates in the elderly indicated some missing cases at older ages. The proportion of microscopically-verified cases increased from 73.6% in 2002 to 82.3% in 2012, with death-certificate-only (DCO) proportions stable at around 0.1% and unknown stage recorded in 9.6% of male and 7.5% of female solid tumours. Timeliness was considered acceptable, with reporting >99% complete within a turn-around time of 15 months. While timely reporting of national data reflects the advantages of a mandatory data collection system, a low DCO% and observed age-specific declines suggest possible underreporting of incidence and mortality data, particularly at older ages. Overall, the evaluation indicates that the data are reasonably comparable and thus may be used to describe the magnitude of the cancer burden in Ukraine. Given its central role in monitoring and evaluation of cancer control activities, ensuring the sustainability of NCRU operations throughout the process of healthcare system reform is of utmost importance. Copyright © 2018 Elsevier Ltd. All rights reserved.

75 FR 38145 - Announcing the New National Electronic Job Registry for Use in the H-2A Temporary Agricultural...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-01

...The Employment and Training Administration (ETA) is announcing that the National Electronic Job Registry (job registry) in which H-2A job orders will be posted and available to the public will be operational on July 8, 2010.

The Drug Overdose Epidemic and Deceased-Donor Transplantation in the United States: A National Registry Study.

PubMed

Durand, Christine M; Bowring, Mary G; Thomas, Alvin G; Kucirka, Lauren M; Massie, Allan B; Cameron, Andrew; Desai, Niraj M; Sulkowski, Mark; Segev, Dorry L

2018-05-15

The epidemic of drug overdose deaths in the United States has led to an increase in organ donors. To characterize donors who died of overdose and to analyze outcomes among transplant recipients. Prospective observational cohort study. Scientific Registry of Transplant Recipients, 1 January 2000 to 1 September 2017. 138 565 deceased donors; 337 934 transplant recipients at 297 transplant centers. The primary exposure was donor mechanism of death (overdose-death donor [ODD], trauma-death donor [TDD], or medical-death donor [MDD]). Patient and graft survival and organ discard (organ recovered but not transplanted) were compared using propensity score-weighted standardized risk differences (sRDs). A total of 7313 ODDs and 19 897 ODD transplants (10 347 kidneys, 5707 livers, 2471 hearts, and 1372 lungs) were identified. Overdose-death donors accounted for 1.1% of donors in 2000 and 13.4% in 2017. They were more likely to be white (85.1%), aged 21 to 40 years (66.3%), infected with hepatitis C virus (HCV) (18.3%), and increased-infectious risk donors (IRDs) (56.4%). Standardized 5-year patient survival was similar for ODD organ recipients compared with TDD organ recipients (sRDs ranged from 3.1% lower to 3.9% higher survival) and MDD organ recipients (sRDs ranged from 2.1% to 5.2% higher survival). Standardized 5-year graft survival was similar between ODD and TDD grafts (minimal difference for kidneys and lungs, marginally lower [sRD, -3.2%] for livers, and marginally higher [sRD, 1.9%] for hearts). Kidney discard was higher for ODDs than TDDs (sRD, 5.2%) or MDDs (sRD, 1.5%); standardization for HCV and IRD status attenuated this difference. Inability to distinguish between opioid and nonopioid overdoses. In the United States, transplantation with ODD organs has increased dramatically, with noninferior outcomes in transplant recipients. Concerns about IRD behaviors and hepatitis C among donors lead to excess discard that should be minimized given the current organ

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

Utilizing national and international registries to enhance pre-market medical device regulatory evaluation.

PubMed

Yue, Lilly Q; Campbell, Gregory; Lu, Nelson; Xu, Yunling; Zuckerman, Bram

2016-01-01

Regulatory decisions are made based on the assessment of risk and benefit of medical devices at the time of pre-market approval and subsequently, when post-market risk-benefit balance needs reevaluation. Such assessments depend on scientific evidence obtained from pre-market studies, post-approval studies, post-market surveillance studies, patient perspective information, as well as other real world data such as national and international registries. Such registries provide real world evidence and are playing a more and more important role in enhancing the safety and effectiveness evaluation of medical devices. While these registries provide large quantities of data reflecting real world practice and can potentially reduce the cost of clinical trials, challenges arise concerning (1) data quality adequate for regulatory decision-making, (2) bias introduced at every stage and aspect of study, (3) scientific validity of study designs, and (4) reliability and interpretability of study results. This article will discuss related statistical and regulatory challenges and opportunities with examples encountered in medical device regulatory reviews.

Smoking, physical exercise, BMI and late foetal death: a study within the Danish National Birth Cohort.

PubMed

Morales-Suárez-Varela, Maria; Nohr, Ellen A; Bech, Bodil H; Wu, Chunsen; Olsen, Jørn

2016-10-01

The aim of this paper was to estimate the effect of maternal and paternal smoking on foetal death (miscarriage and stillbirth) and to estimate potential interactions with physical exercise and pre-pregnancy body mass index. We selected 87,930 pregnancies from the population-based Danish National Birth Cohort. Information about lifestyle, occupational, medical and obstetric factors was obtained from a telephone interview and data on pregnancy outcomes came from the Danish population based registries. Cox regression was used to estimate the hazard ratios (adjusted for potential confounders) for predominantly late foetal death (miscarriage and stillbirth). An interaction contrast ratio was used to assess potential effect measure modification of smoking by physical exercise and body mass index. The adjusted hazard ratio of foetal death was 1.22 (95 % CI 1.02-1.46) for couples where both parents smoked compared to non-smoking parents (miscarriage: 1.18, 95 % CI 0.96-1.44; stillbirth: 1.32, 95 % CI 0.93-1.89). On the additive scale, we detected a small positive interaction for stillbirth between smoking and body mass index (overweight women). In conclusion, smoking during pregnancy was associated with a slightly higher hazard ratio for foetal death if both parents smoked. This study suggests that smoking may increase the negative effect of a high BMI on foetal death, but results were not statistically significant for the interaction between smoking and physical exercise.

Prostate Cancer in South Africa: Pathology Based National Cancer Registry Data (1986–2006) and Mortality Rates (1997–2009)

PubMed Central

Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

2014-01-01

Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986–2006) and data on mortality (1997–2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA. PMID:24955252

75 FR 53953 - The National Saltwater Angler Registry Program; Designation of Exempted States for Anglers, Spear...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-02

... DEPARTMENT OF COMMERCE National Oceanic and Atmospheric Administration RIN 0648-XX66 The National Saltwater Angler Registry Program; Designation of Exempted States for Anglers, Spear Fishers, and For-Hire... as exempted states for anglers, spear fishers and for-hire fishing vessels. NMFS has designated the...

The new opt-out Dutch National Breast Implant Registry - Lessons learnt from the road to implementation.

PubMed

Rakhorst, Hinne A; Mureau, Marc A M; Cooter, Rodney D; McNeil, John; van Hooff, Miranda; van der Hulst, René; Hommes, Juliette; Hoornweg, Marije; Moojen-Zaal, Laura; Liem, Patricia; Mathijssen, Irene M J

2017-10-01

An estimated 1-3% of all women in the Netherlands carry breast implants. Since the introduction five decades ago, problems with a variety of breast implants have emerged with direct consequences for the patients' health. Plastic surgeons worldwide reacted through campaigning for auditing on long-term implant quality, surgeon performance, and institutional outcomes in implant registries. Especially, the PIP implant scandal of 2010 demonstrated the paucity of epidemiological data and uncovered a weakness in our ability to even 'track and trace' patients. In addition, a recent report of the Dutch Institute of National Health showed a lack of compliance of 100% of breast implant producers to CE requirements. These arguments stress the need for an independent implant registry. Insufficient capture rates or dependence from the implant producers made the variety of national and international patient registries unreliable. The Dutch Breast Implant Registry (DBIR) is unique because it is an opt-out registry without the need for informed consent and thus a high capture rate. Furthermore, an estimated 95% of breast implants are implanted by board-certified plastic surgeons. Funding was received from a non-governmental organisation to increase the quality of health care in the Netherlands, and maintenance is gathered by 25 euros per implant inserted. This article describes the way the Dutch have set up their system, with special attention to the well-known hurdles of starting a patient registry. Examples include: funding, medical ethical issues, opt out system, benchmarking, quality assurance as well as governance and collaboration. The Dutch consider their experience and data shareware for others to be used globally to the benefit of patient safety and quality improvement. Copyright © 2017 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.

High intensity focused ultrasound ablation for atrial fibrillation: results from the National Spanish Registry.

PubMed

Reyes, Guillermo; Ruyra, Xavier; Valderrama, Francisco; Jimenez, Antonio; Duran, Dario; Perez, Enrique; Daroca, Tomas; Moya, Javier; Ramirez, Ulises; Aldamiz, Gonzalo

2016-10-01

A National Spanish Registry to compile all patients treated with high intensity focused ultrasound (HIFU) energy for atrial fibrillation (AF) was created to evaluate the safety and efficacy of AF surgical ablation. A national Spanish registry was created, and ten hospitals using HIFU to ablate AF joined it. A total of 412 patients undergoing cardiac surgery between 2006 and February 2013 were included. AF was divided between paroxysmal AF (33%) and persistent AF (67%) with a mean AF duration of 29.3±108.2 months. Mean left atrial diameter was 51.2±6.5 mm. Mean underlying heart disease were aortic valve disease (49.3%), ischemic disease (25.2%) and mitral disease (33.2%) Clinical follow-up of patients and a 6 months postoperative echocardiogram were performed in all patients. A pacemaker implantation was needed in 4.9% of patients with a perioperative stroke in 2.5%. Rhythm at discharge from hospital was sinus rhythm in 58%, AF in 35.9% and atrial flutter in 0.8% of patients. Sinus rhythm restoration at 6, 12, 24 and 36 months follow-up was achieved in 66.1%, 63.8%, 63.9% and 45.9% of patients respectively. Multivariate analysis showed paroxysmal AF and sinus rhythm restoration in the operating theatre as factors related to sinus rhythm long term restoration. The Spanish national registry showed an efficacy of AF ablation with the HIFU Epicor system of 66.1%, 63.8%, 63.9% and 45.9% at 6, 12, 24 and 36 months follow-up. There were no device-related complications.

Coding completeness and quality of relative survival-related variables in the National Program of Cancer Registries Cancer Surveillance System, 1995-2008.

PubMed

Wilson, Reda J; O'Neil, M E; Ntekop, E; Zhang, Kevin; Ren, Y

2014-01-01

Calculating accurate estimates of cancer survival is important for various analyses of cancer patient care and prognosis. Current US survival rates are estimated based on data from the National Cancer Institute's (NCI's) Surveillance, Epidemiology, and End RESULTS (SEER) program, covering approximately 28 percent of the US population. The National Program of Cancer Registries (NPCR) covers about 96 percent of the US population. Using a population-based database with greater US population coverage to calculate survival rates at the national, state, and regional levels can further enhance the effective monitoring of cancer patient care and prognosis in the United States. The first step is to establish the coding completeness and coding quality of the NPCR data needed for calculating survival rates and conducting related validation analyses. Using data from the NPCR-Cancer Surveillance System (CSS) from 1995 through 2008, we assessed coding completeness and quality on 26 data elements that are needed to calculate cancer relative survival estimates and conduct related analyses. Data elements evaluated consisted of demographic, follow-up, prognostic, and cancer identification variables. Analyses were performed showing trends of these variables by diagnostic year, state of residence at diagnosis, and cancer site. Mean overall percent coding completeness by each NPCR central cancer registry averaged across all data elements and diagnosis years ranged from 92.3 percent to 100 percent. RESULTS showing the mean percent coding completeness for the relative survival-related variables in NPCR data are presented. All data elements but 1 have a mean coding completeness greater than 90 percent as was the mean completeness by data item group type. Statistically significant differences in coding completeness were found in the ICD revision number, cause of death, vital status, and date of last contact variables when comparing diagnosis years. The majority of data items had a coding

Impact of Diabetes Mellitus on Hospitalization for Heart Failure, Cardiovascular Events, and Death: Outcomes at 4 Years From the Reduction of Atherothrombosis for Continued Health (REACH) Registry.

PubMed

Cavender, Matthew A; Steg, Ph Gabriel; Smith, Sidney C; Eagle, Kim; Ohman, E Magnus; Goto, Shinya; Kuder, Julia; Im, Kyungah; Wilson, Peter W F; Bhatt, Deepak L

2015-09-08

Despite the known association of diabetes mellitus with cardiovascular events, there are few contemporary data on the long-term outcomes from international cohorts of patients with diabetes mellitus. We sought to describe cardiovascular outcomes at 4 years and to identify predictors of these events in patients with diabetes mellitus. The Reduction of Atherothrombosis for Continued Health (REACH) registry is an international registry of patients at high risk of atherothrombosis or established atherothrombosis. Four-year event rates in patients with diabetes mellitus were determined with the corrected group prognosis method. Of the 45 227 patients in the REACH registry who had follow-up at 4 years, 43.6% (n=19 699) had diabetes mellitus at baseline. The overall risk and hazard ratio (HR) of cardiovascular death, nonfatal myocardial infarction, or nonfatal stroke were greater in patients with diabetes compared with patients without diabetes (16.5% versus 13.1%; adjusted HR, 1.27; 95% confidence interval [CI] 1.19-1.35). There was also an increase in both cardiovascular death (8.9% versus 6.0%; adjusted HR, 1.38; 95% CI, 1.26-1.52) and overall death (14.3% versus 9.9%; adjusted HR, 1.40; 95% CI, 1.30-1.51). Diabetes mellitus was associated with a 33% greater risk of hospitalization for heart failure (9.4% versus 5.9%; adjusted odds ratio, 1.33; 95% CI, 1.18-1.50). In patients with diabetes mellitus, heart failure at baseline was independently associated with cardiovascular death (adjusted HR, 2.45; 95% CI, 2.17-2.77; P<0.001) and hospitalization for heart failure (adjusted odds ratio, 4.72; 95% CI, 4.22-5.29; P<0.001). Diabetes mellitus substantially increases the risk of death, ischemic events, and heart failure. Patients with both diabetes mellitus and heart failure are at particularly elevated risk of cardiovascular death, highlighting the need for additional therapies in this high-risk population. © 2015 American Heart Association, Inc.

High Mortality without ESCAPE: The Registry of Heart Failure Patients Receiving Pulmonary Artery Catheters without Randomization

PubMed Central

Allen, Larry A.; Rogers, Joseph G.; Warnica, J. Wayne; DiSalvo, Thomas G.; Tasissa, Gudaye; Binanay, Cynthia; O’Connor, Christopher M.; Califf, Robert M.; Leier, Carl V.; Shah, Monica R.; Stevenson, Lynne W.

2008-01-01

Background In ESCAPE, there was no difference in days alive and out of the hospital for patients with decompensated heart failure (HF) randomly assigned to therapy guided by pulmonary artery catheter (PAC) plus clinical assessment versus clinical assessment alone. The external validity of these findings is debated. Methods and Results ESCAPE sites enrolled 439 patients receiving PAC without randomization in a prospective registry. Baseline characteristics, pertinent trial exclusion criteria, reasons for PAC use, hemodynamics, and complications were collected. Survival was determined from the National Death Index and the Alberta Registry. On average, registry patients had lower blood pressure, worse renal function, less neurohormonal antagonist therapy, and higher use of intravenous inotropes as compared with trial patients. Although clinical assessment anticipated less volume overload and greater hypoperfusion among the registry population, measured filling pressures were similarly elevated in the registry and trial, while measured perfusion was slightly higher among registry patients. Registry patients had longer hospitalization (13 vs. 6 days, p <0.001) and higher 6-month mortality (34% vs. 20%, p < 0.001) than trial patients. Conclusions The decision to use PAC without randomization identified a population with higher disease severity and risk of mortality. This prospective registry highlights the complex context of patient selection for randomized trials. PMID:18926438

Surveillance for violent deaths--National Violent Death Reporting System, 16 states, 2009.

PubMed

Karch, Debra L; Logan, Joseph; McDaniel, Dawn; Parks, Sharyn; Patel, Nimesh

2012-09-14

An estimated 50,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 U.S. states for 2009. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2009. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports. NVDRS data collection began in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004, four (California, Kentucky, New Mexico, and Utah) in 2005, and two (Ohio and Michigan) in 2010, for a total of 19 states. This report includes data from 16 states that collected statewide data in 2009. California is excluded because data were collected in only four counties. Ohio and Michigan are excluded because data collection did not begin until 2010. For 2009, a total of 15,981 fatal incidents involving 16,418 deaths were captured by NVDRS in the 16 states included in this report. The majority (60.6%) of deaths were suicides, followed by homicides and deaths involving legal intervention (i.e., deaths caused by police and other persons with legal authority to use deadly force, excluding legal executions) (24.7%), deaths of undetermined intent (14.2%), and unintentional firearm deaths (0.5%). Suicides occurred at higher rates among males, non-Hispanic whites, American Indians/Alaska Natives, and persons aged 45-54 years. Suicides occurred most often in a house or apartment and involved the use of firearms. Suicides were preceded primarily by mental health, intimate partner, or physical health problems or by a crisis during the previous 2 weeks. Homicides

Surveillance for violent deaths--national violent death reporting system, 16 States, 2006.

PubMed

Karch, Debra L; Dahlberg, Linda L; Patel, Nimesh; Davis, Terry W; Logan, Joseph E; Hill, Holly A; Ortega, Lavonne

2009-03-20

An estimated 50,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 U.S. states for 2006. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2006. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports. NVDRS began operation in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004 and four (California, Kentucky, New Mexico, and Utah) in 2005, for a total of 17 states. This report includes data from 16 states that collected statewide data; data from California are not included in this report because NVDRS has been implemented only in a limited number of California cities and counties rather than statewide. For 2006, a total of 15,007 fatal incidents involving 15,395 violent deaths occurred in the 16 NVDRS states included in this report. The majority (55.9%) of deaths were suicides, followed by homicides and deaths involving legal intervention (e.g. a suspect is killed by a law enforcement officer in the line of duty)(28.2%), violent deaths of undetermined intent (15.1%), and unintentional firearm deaths (0.7%). Suicides occurred at higher rates among males, American Indians/Alaska Natives (AI/ANs), non-Hispanic whites, and persons aged 45--54 years and occurred most often in a house or apartment and involved the use of firearms. Suicides were precipitated primarily by mental-health, intimate-partner, or physical-health problems or by a crisis during the preceding 2 weeks. Homicides occurred at higher rates among males and persons aged 20

Immunisation Registries at regional level in Italy and the roadmap for a future Italian National Registry.

PubMed

D'Ancona, F; Gianfredi, V; Riccardo, F; Iannazzo, S

2018-01-01

Immunization Information Systems, or Immunisation registries (IRs), are essential to monitor and evaluate the accessibility, quality and outcomes of immunisation programmes both at local and national level. We conducted a cross-sectional survey in order to investigate and map the level of IRs implementation obtained by the 21 Italian Regional Health Authorities. On this basis we defined a roadmap towards implementing an Italian National IR. We designed an online questionnaire. Data were collected from July to September 2016 from all the 21 Regional Health Authorities in charge of infectious diseases control and immunization management. 18/21 Italian Regions have fully implemented an IR, out of them, 11 use the same software for all Local Health Units. Two Regions have partially implemented their IRs and one Region is not yet computerised. The decentralization of the Italian Health System is reflected also on the IRs characteristics and functionalities in terms of fragmented implementation of IRs and diversity in the software systems and data flows in place. Future efforts should not only aim not only to clarify the functionalities of Regional IRs, but should also aim to define how aggregation of data at national level can be optimised.

Association Between Delayed Graft Function and Graft Loss in Donation After Cardiac Death Kidney Transplants-A Paired Kidney Registry Analysis.

PubMed

Lim, Wai H; McDonald, Stephen P; Russ, Graeme R; Chapman, Jeremy R; Ma, Maggie Km; Pleass, Henry; Jaques, Bryon; Wong, Germaine

2017-06-01

Delayed graft function (DGF) is an established complication after donation after cardiac death (DCD) kidney transplants, but the impact of DGF on graft outcomes is uncertain. To minimize donor variability and bias, a paired donor kidney analysis was undertaken where 1 kidney developed DGF and the other did not develop DGF using data from the Australia and New Zealand Dialysis and Transplant Registry. Using paired DCD kidney data from the Australia and New Zealand Dialysis and Transplant Registry, we examined the association between DGF, graft and patient outcomes between 1994 and 2012 using adjusted Cox regression models. Of the 74 pairs of DCD kidneys followed for a median of 1.9 years (408 person-years), a greater proportion of recipients with DGF had experienced overall graft loss and death-censored graft loss at 3 years compared with those without DGF (14% vs 4%, P = 0.04 and 11% vs 0%, P < 0.01, respectively). Compared with recipients without DGF, the adjusted hazard ratio for overall graft loss at 3 years for recipients with DGF was 4.31 (95% confidence interval [95% CI], 1.13-16.44). The adjusted hazard ratio for acute rejection and all-cause mortality at 3 years in recipients who have experienced DGF were 0.98 (95% CI, 0.96-1.01) and 1.70 (95% CI, 0.36-7.93), respectively, compared with recipients without DGF. Recipients of DCD kidneys with DGF experienced a higher incidence of overall and death-censored graft loss compared with those without DGF. Strategies aim to reduce the risk of DGF could potentially improve graft survival in DCD kidney transplants.

National Kidney Registry: 213 transplants in three years.

PubMed

Veale, Jeffrey; Hil, Garet

2010-01-01

Since its establishment in 2008, the National Kidney Registry has facilitated 213 kidney transplants between unrelated living donors and recipients at 28 transplant centers. Rapid innovations in matching strategies, advanced computer technologies, good communication and an evolving understanding of the processes at participating transplant centers and histocompatibility laboratories are among the factors driving the success of the NKR. Virtual cross match accuracy has improved from 43% to 91% as a result of changes to the HLA typing requirements for potential donors and improved mechanisms to list unacceptable HLA antigens for sensitized patients. A uniform financial agreement among participating centers eliminated a major roadblock to facilitate unbalanced donor kidney exchanges among centers. The NKR transplanted 64% of the patients registered since 2008 and the average waiting time for those transplanted in 2010 was 11 months.

Malnutrition related deaths.

PubMed

Sparre-Sørensen, Maja; Kristensen, Gustav N

2016-10-01

Studies have shown that malnutrition increases the risk of morbidity, mortality, the length of hospital stay, and costs in the elderly population. Approximately one third of all patients admitted to geriatric wards in Denmark are malnourished according to the Danish Geriatric database. The aim of this study is to describe and examine the sudden increase in deaths due to malnutrition in the elderly population in Denmark from 1999 and, similarly, the sudden decline in malnutrition related deaths in 2007. A descriptive epidemiologic study was performed. All Danes listed in the national death registry who died from malnutrition in the period from 1994 to 2012 are included. The number of deaths from malnutrition increased significantly during the period from 1999 to 2007, especially in the age group 70 years and over. Additionally, we document a surprising similarity between the development in excess mortality from malnutrition in the five Danish regions during the same period. During the period 1999-2007 malnutrition was the direct cause of 340 extra deaths, and probably ten times more registered under other diseases. This development in excess mortality runs parallel in all five Danish regions over time. Copyright © 2016 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved.

Surveillance for violent deaths--National Violent Death Reporting System, 16 States, 2007.

PubMed

Karch, Debra L; Dahlberg, Linda L; Patel, Nimesh

2010-05-14

An estimated 50,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 states for 2007. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2007. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports. NVDRS began operation in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004, four (California, Kentucky, New Mexico, and Utah) in 2005, and two states (Ohio and Michigan) were funded to begin data collection in 2010, totaling 19 states. This report includes data from 16 states that collected statewide data in 2007. California data are not included in this report because NVDRS data are collected only in a limited number of California cities and counties rather than statewide. Ohio and Michigan are excluded because they did not begin data collection until 2010. For 2007, a total of 15,882 fatal incidents involving 16,319 deaths occurred in the 16 NVDRS states included in this report. The majority (56.6%) of deaths was suicides, followed by homicides and deaths involving legal intervention (i.e., deaths caused by police and other persons with legal authority to use deadly force, excluding legal executions) (28.0%), deaths of undetermined intent (14.7%), and unintentional firearm deaths (0.7%). Suicides occurred at higher rates among males, American Indians/Alaska Natives, non-Hispanic whites, and persons aged 45--54 years. Suicides occurred most often in a house or apartment and involved the use of firearms. Suicides were precipitated primarily by

The implementation of a national trauma registry in Greece. Methodology and preliminary results.

PubMed

Katsaragakis, Stylianos; Theodoraki, Maria E; Toutouzas, Kostas; Drimousis, Panagiotis G; Larentzakis, Antreas; Stergiopoulos, Spiros; Aggelakis, Christos; Lapidakis, George; Massalis, Ioannis; Theodorou, Dimitrios

2009-12-01

Trauma is a leading cause of death worldwide and a major health problem of the modern society. Trauma systems are considered the gold standard of managing patients with trauma. An integral part of any trauma system is a trauma registry. In Europe, and particularly in Greece, trauma registries and systems are in an embryonic stage. In this study, we present an attempt to record trauma in Greece. The Hellenic Society of Trauma and Emergency Surgery invited all the official representatives of the society throughout the country to participate in the study. In succeeding meetings of the representatives, the reporting form was developed and the inclusion criteria were defined meticulously. Inclusion criteria were defined as patients with trauma requiring admission, transfer to a higher level center, or arrived dead or died in the emergency department of the reporting hospital. All reports were accumulated by the Hellenic Trauma society, imported in an electronic database, and analyzed. Thirty-two hospitals receiving patients with trauma participated in the country, representing 40% of the country's healthcare facilities and serving 40% of the country's population. In 12 months time, (October 2005 to September 2006), 8,862 patients were included in the study. Of them, 66.9% were men and 31.3% were women. The compilation rate of the reporting forms was surprisingly high, considering that the final reporting form included 150 data points and that there were no independent personnel in charge of filling the forms. Trauma registries are feasible even in health care systems where funding of medical research is sparse.

eRegistries: Electronic registries for maternal and child health.

PubMed

Frøen, J Frederik; Myhre, Sonja L; Frost, Michael J; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid K; French, Steve; Jani, Jagrati V; Kaye, Jane; Lewis, John; Lunde, Ane; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J

2016-01-19

information. More mature country capacity reflected by published health registry based research is emerging in settings reaching regional or national scale, increasingly with electronic solutions. 66 scientific publications were identified based on 32 registry systems in 23 countries over a period of 10 years; this reflects a challenging experience and capacity gap for delivering sustainable high quality registries. Registries are being developed and used in many high burden countries, but their potential benefits are far from realized as few countries have fully transitioned from paper-based health information to integrated electronic backbone systems. Free tools and frameworks exist to facilitate progress in health information for women and children.

Did death certificates and a death review process agree on lung cancer cause of death in the National Lung Screening Trial?

PubMed

Marcus, Pamela M; Doria-Rose, Vincent Paul; Gareen, Ilana F; Brewer, Brenda; Clingan, Kathy; Keating, Kristen; Rosenbaum, Jennifer; Rozjabek, Heather M; Rathmell, Joshua; Sicks, JoRean; Miller, Anthony B

2016-08-01

Randomized controlled trials frequently use death review committees to assign a cause of death rather than relying on cause of death information from death certificates. The National Lung Screening Trial, a randomized controlled trial of lung cancer screening with low-dose computed tomography versus chest X-ray for heavy and/or long-term smokers ages 55-74 years at enrollment, used a committee blinded to arm assignment for a subset of deaths to determine whether cause of death was due to lung cancer. Deaths were selected for review using a pre-determined computerized algorithm. The algorithm, which considered cancers diagnosed during the trial, causes and significant conditions listed on the death certificate, and the underlying cause of death derived from death certificate information by trained nosologists, selected deaths that were most likely to represent a death due to lung cancer (either directly or indirectly) and deaths that might have been erroneously assigned lung cancer as the cause of death. The algorithm also selected deaths that might be due to adverse events of diagnostic evaluation for lung cancer. Using the review cause of death as the gold standard and lung cancer cause of death as the outcome of interest (dichotomized as lung cancer versus not lung cancer), we calculated performance measures of the death certificate cause of death. We also recalculated the trial primary endpoint using the death certificate cause of death. In all, 1642 deaths were reviewed and assigned a cause of death (42% of the 3877 National Lung Screening Trial deaths). Sensitivity of death certificate cause of death was 91%; specificity, 97%; positive predictive value, 98%; and negative predictive value, 89%. About 40% of the deaths reclassified to lung cancer cause of death had a death certificate cause of death of a neoplasm other than lung. Using the death certificate cause of death, the lung cancer mortality reduction was 18% (95% confidence interval: 4.2-25.0), as

Risk of death and myocardial infarction in patients with peripheral arterial disease undergoing percutaneous coronary intervention (from the National Heart, Lung and Blood Institute Dynamic Registry).

PubMed

Parikh, Shailja V; Saya, Shoaib; Divanji, Punag; Banerjee, Subhash; Selzer, Faith; Abbott, J Dawn; Naidu, Srihari S; Wilensky, Robert L; Faxon, David P; Jacobs, Alice K; Holper, Elizabeth M

2011-04-01

Patients with peripheral arterial disease (PAD) undergoing percutaneous coronary intervention (PCI) are at high risk for adverse cardiovascular events. Trends over time in outcomes with advances in PCI and medical therapy are unknown. We evaluated 866 patients with PAD in the National Heart, Lung, and Blood Institute (NHLBI) Dynamic Registry undergoing PCI according to treatment eras: the early bare metal stent (BMS) era (wave 1, 1997 to 1998, n = 180), the BMS era (waves 2 and 3, 1999 and 2001 to 2002, n = 339), and the drug-eluting stent (DES) era (waves 4 and 5, 2004 and 2006, n = 347). We compared in-hospital and 1-year outcomes by recruitment era. In-hospital coronary artery bypass graft surgery rates were significantly lower in the later eras (3.9%, 0.9%, and 0.6% for the early BMS, BMS, and DES eras, respectively, p for trend = 0.005), and an increasing percentage of patients were discharged on aspirin, β blockers, statins, and thienopyridines (p for trend <0.001 for all comparisons). Cumulative 1-year event rates in patients with PAD in the early BMS era, BMS era, and DES era for death were 13.7%, 10.5%, and 9.8% (p for trend = 0.21), those for myocardial infarction (MI) were 9.8%, 8.8%, and 10.0% (p for trend = 0.95), and those for repeat revascularization were 26.8%, 21.0%, and 17.2% (p for trend = 0.008). The 1-year adjusted hazard ratios of adverse events in patients with PAD using the early BMS era as the reference were 0.84 for death in the BMS era (95% confidence interval [CI] 0.46 to 1.55, p = 0.58) and 1.35 in the DES era (95% CI 0.71 to 2.56, p = 0.36), 0.89 for MI in the BMS era (95% CI 0.48 to 1.66, p = 0.72) and 1.02 in the DES era (95% CI 0.55 to 1.87, p = 0.95), and 0.63 for repeat revascularization in the BMS era (95% CI 0.41 to 0.97, p = 0.04) and 0.46 in the DES era (95% CI 0.29 to 0.73, p = 0.001). In conclusion, despite significant improvements in medical therapy and a decrease in repeat revascularization over time, patients with PAD

The Italian Twin Project: from the personal identification number to a national twin registry.

PubMed

Stazi, Maria Antonietta; Cotichini, Rodolfo; Patriarca, Valeria; Brescianini, Sonia; Fagnani, Corrado; D'Ippolito, Cristina; Cannoni, Stefania; Ristori, Giovanni; Salvetti, Marco

2002-10-01

The unique opportunity given by the "fiscal code", an alphanumeric identification with demographic information on any single person residing in Italy, introduced in 1976 by the Ministry of Finance, allowed a database of all potential Italian twins to be created. This database contains up to now name, surname, date and place of birth and home address of about 1,300,000 "possible twins". Even though we estimated an excess of 40% of pseudo-twins, this still is the world's largest twin population ever collected. The database of possible twins is currently used in population-based studies on multiple sclerosis, Alzheimer's disease, celiac disease, and type 1 diabetes. A system is currently being developed for linking the database with data from mortality and cancer registries. In 2001, the Italian Government, through the Ministry of Health, financed a broad national research program on twin studies, including the establishment of a national twin registry. Among all the possible twins, a sample of 500,000 individuals are going to be contacted and we expect to enrol around 120,000 real twin pairs in a formal Twin Registry. According to available financial resources, a sub sample of the enrolled population will be asked to donate DNA. A biological bank from twins will be then implemented, guaranteeing information on future etiological questions regarding genetic and modifiable factors for physical impairment and disability, cancers, cardiovascular diseases and other age related chronic illnesses.

The use of intra-aortic balloon counterpulsation in patients with cardiogenic shock complicating acute myocardial infarction: data from the National Registry of Myocardial Infarction 2.

PubMed

Barron, H V; Every, N R; Parsons, L S; Angeja, B; Goldberg, R J; Gore, J M; Chou, T M

2001-06-01

Cardiogenic shock complicating acute myocardial infarction (AMI) remains the leading cause of death in patients hospitalized with AMI. Although several studies have demonstrated the importance of establishing and maintaining a patent infarct-related artery, it remains unclear as to whether intra-aortic balloon counterpulsation (IABP) provides incremental benefit to reperfusion therapy. The purpose of this study was to determine whether IABP use is associated with lower in-hospital mortality rates in patients with AMI complicated by cardiogenic shock in a large AMI registry. We evaluated patients participating in the National Registry of Myocardial Infarction 2 who had cardiogenic shock at initial examination or in whom cardiogenic shock developed during hospitalization (n = 23,180). The mean age of patients in the study was 72 years, 54% were men, and the majority were white. The overall mortality rate in all patients who had cardiogenic shock or in whom cardiogenic shock developed was 70%. IABP was used in 7268 (31%) patients. IABP use was associated with a significant reduction in mortality rates in patients who received thrombolytic therapy (67% vs 49%) but was not associated with any benefit in patients treated with primary angioplasty (45% vs 47%). In a multivariate model, the use of IABP in conjunction with thrombolytic therapy decreased the odds of death by 18% (odds ratio, 0.82; 95% confidence interval, 0.72 to 0.93). Patients with AMI complicated by cardiogenic shock may have substantial benefit from IABP when used in combination with thrombolytic therapy.

Conference Proceedings: “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks”

PubMed Central

Oster-Granite, Mary Lou; Parisi, Melissa A.; Abbeduto, Leonard; Berlin, Dorit S.; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L.; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A.; Reeves, Roger H.; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F.; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R.B.; Maddox, Yvonne T.

2011-01-01

A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. PMID:21835664

Rheumatology Informatics System for Effectiveness: A National Informatics-Enabled Registry for Quality Improvement.

PubMed

Yazdany, Jinoos; Bansback, Nick; Clowse, Megan; Collier, Deborah; Law, Karen; Liao, Katherine P; Michaud, Kaleb; Morgan, Esi M; Oates, James C; Orozco, Catalina; Reimold, Andreas; Simard, Julia F; Myslinski, Rachel; Kazi, Salahuddin

2016-12-01

The Rheumatology Informatics System for Effectiveness (RISE) is a national electronic health record (EHR)-enabled registry. RISE passively collects data from EHRs of participating practices, provides advanced quality measurement and data analytic capacities, and fulfills national quality reporting requirements. Here we report the registry's architecture and initial data, and we demonstrate how RISE is being used to improve the quality of care. RISE is a certified Centers for Medicare and Medicaid Services Qualified Clinical Data Registry, allowing collection of data without individual patient informed consent. We analyzed data between October 1, 2014 and September 30, 2015 to characterize initial practices and patients captured in RISE. We also analyzed medication use among rheumatoid arthritis (RA) patients and performance on several quality measures. Across 55 sites, 312 clinicians contributed data to RISE; 72% were in group practice, 21% in solo practice, and 7% were part of a larger health system. Sites contributed data on 239,302 individuals. Among the subset with RA, 34.4% of patients were taking a biologic or targeted synthetic disease-modifying antirheumatic drug (DMARD) at their last encounter, and 66.7% were receiving a nonbiologic DMARD. Examples of quality measures include that 55.2% had a disease activity score recorded, 53.6% a functional status score, and 91.0% were taking a DMARD in the last year. RISE provides critical infrastructure for improving the quality of care in rheumatology and is a unique data source to generate new knowledge. Data validation and mapping are ongoing and RISE is available to the research and clinical communities to advance rheumatology. © 2016, American College of Rheumatology.

The Vietnam Era Twin Registry: a resource for medical research.

PubMed Central

Henderson, W G; Eisen, S; Goldberg, J; True, W R; Barnes, J E; Vitek, M E

1990-01-01

The Vietnam Era Twin Registry consists of 4,774 male-male twin pairs born between 1939 and 1957 with both brothers having served in the United States military during the Vietnam War. The registry was originally developed to provide the best control group for Vietnam-exposed servicemen to study the long-term health consequences of service in Vietnam. Recognizing the potential value of the registry for other areas of medical research, the Department of Veterans Affairs in 1988 opened the registry for use by both VA and non-VA investigators. The existence of centralized VA data bases for deaths and VA hospitalizations will strengthen future followup of the twins. This article describes the characteristics of the registry population and the process for accessing the registry. PMID:2116638

The National Kidney Registry: 175 transplants in one year.

PubMed

Veale, Jeffrey; Hil, Garet

2011-01-01

Since organizing its first swap in 2008, the National Kidney Registry had facilitated 389 kidney transplants by the end of 2011 across 45 U.S. transplant centers. Rapid innovations, advanced computer technologies, and an evolving understanding of the processes at participating transplant centers and histocompatibility laboratories are among the factors driving the success of the NKR. Virtual cross match accuracy has improved from 43% to 94% as a result of improvements in the HLA typing process for donor antigens and enhanced mechanisms to list unacceptable HLA antigens for sensitized patients. By the end of 2011, the NKR had transplanted 66% of the patients enrolled since 2008. The 2011 wait time (from enrollment to transplant) for the 175 patients transplanted that year averaged 5 months.

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.

Comparing unplanned and potentially planned home deaths: a population-based cross-sectional study.

PubMed

Kjellstadli, Camilla; Husebø, Bettina Sandgathe; Sandvik, Hogne; Flo, Elisabeth; Hunskaar, Steinar

2018-05-02

There is little research on number of planned home deaths. We need information about factors associated with home deaths, but also differences between planned and unplanned home deaths to improve end-of-life-care at home and make home deaths a feasible alternative. Our aim was to investigate factors associated with home deaths, estimate number of potentially planned home deaths, and differences in individual characteristics between people with and without a potentially planned home death. A cross-sectional study of all decedents in Norway in 2012 and 2013, using data from the Norwegian Cause of Death Registry and National registry for statistics on municipal health and care services. We defined planned home death by an indirect algorithm-based method using domiciliary care and diagnosis. We used logistic regressions models to evaluate factors associated with home death compared with nursing home and hospital; and to compare unplanned home deaths and potentially planned home deaths. Among 80,908 deaths, 12,156 (15.0%) were home deaths. A home death was most frequent in 'Circulatory diseases' and 'Cancer', and associated with male sex, younger age, receiving domiciliary care and living alone. Only 2.3% of home deaths were from 'Dementia'. In total, 41.9% of home deaths and 6.3% of all deaths were potentially planned home deaths. Potentially planned home deaths were associated with higher age, but declined in ages above 80 years for people who had municipal care. Living together with someone was associated with more potentially planned home deaths for people with municipal care. There are few home deaths in Norway. Our estimations indicate that even fewer people than anticipated have a potentially planned home death.

Surveillance for violent deaths--National Violent Death Reporting System, 16 states, 2005.

PubMed

Karch, Debra L; Lubell, Keri M; Friday, Jennifer; Patel, Nimesh; Williams, Dionne D

2008-04-11

An estimated 50,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 U.S. states for 2005. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2005. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports. NVDRS began operation in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004 and four (California, Kentucky, New Mexico, and Utah) in 2005, for a total of 17 states. This report includes data from 16 states; data from California are not included in this report because NVDRS has been implemented only in a limited number of California cities and counties rather than statewide as in other states. For 2005, a total of 15,495 fatal incidents involving 15,962 violent deaths occurred in the 16 NVDRS states included in this report. The majority (56.1%) of deaths were suicides, followed by homicides and deaths involving legal interventions (29.6%), violent deaths of undetermined intent (13.3%), and unintentional firearm deaths (0.7%). Fatal injury rates varied by sex, race/ethnicity, age group, and method of injury. Rates were substantially higher for males than for females and for American Indians/Alaska Natives (AI/ANs) and blacks than for whites and Hispanics. Rates were highest for persons aged 20-24 years. For method of injury, the three highest rates were reported for firearms, poisonings, and hanging/strangulation/suffocation. Suicides occurred at higher rates among males, AI/ANs, whites, and older persons and most often involved the use of

Surveillance for violent deaths--National Violent Death Reporting System, 16 states, 2008.

PubMed

Karch, Debra L; Logan, Joseph; Patel, Nimesh

2011-08-26

An estimated 50,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 U.S. states for 2008. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2008. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, and law enforcement reports. NVDRS data collection began in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004, four (California, Kentucky, New Mexico, and Utah) in 2005, and two in 2010 (Ohio and Michigan) for a total of 19 states. This report includes data from 16 states that collected statewide data in 2008; data from California are not included in this report because NVDRS was implemented only in a limited number of California cities and counties rather than statewide. Ohio and Michigan are excluded because they did not begin data collection until 2010. For 2008, a total of 15,755 fatal incidents involving 16,138 deaths were captured by NVDRS in the 16 states included in this report. The majority (58.7%) of deaths were suicides, followed by homicides and deaths involving legal intervention (i.e. deaths caused by police and other persons with legal authority to use deadly force, excluding legal executions) (26.4%), deaths of undetermined intent (14.5%), and unintentional firearm deaths (0.4%). Suicides occurred at higher rates among males, American Indians/Alaska Natives (AI/ANs), non-Hispanic whites, and persons aged 45-54 years. Suicides occurred most often in a house or apartment (70.6%) and involved the use of firearms (51.5%). Suicides were precipitated primarily

Quality of data collected for severity of illness scores in the Dutch National Intensive Care Evaluation (NICE) registry.

PubMed

Arts, Daniëlle; de Keizer, Nicolette; Scheffer, Gert-Jan; de Jonge, Evert

2002-05-01

To analyse the quality of data used to measure severity of illness in the Dutch National Intensive Care Evaluation (NICE) registry, after implementation of quality improving procedures. Data were re-abstracted from the paper records of patients or the Patient Data Management System and compared to the data contained in the registry. The re-abstracted data were considered to be the gold standard. ICUs of nine Dutch hospitals that had been collecting data for the NICE registry for at least 1 year. The mean percentages of inaccurate and incomplete data, per hospital, over all variables, were 6.1%+/-4.4 (SD) and 2.7%+/-4.4 (SD), respectively. The mean difference in severity of illness scores between registry data and re-abstracted data was 0.2 points for APACHE II and 0.4 points for SAPS II. The mean difference in predicted mortality according to APACHE II and SAPS II between registry data and re-abstracted data was 0.4% and 0.02%, respectively. The current data quality of the NICE registry is good and justifies evaluative research. These positive results might be explained by the implementation of several quality assurance procedures in the NICE registry, such as training and automatic data checks. Electronic supplementary material to this paper can be obtained by using the Springer LINK server located at http://dx.doi.org/10.1007/s00134-002-1272-z

Assessment of immunization registry databases as supplemental sources of data to improve ascertainment of vaccination coverage estimates in the national immunization survey.

PubMed

Khare, Meena; Piccinino, Linda; Barker, Lawrence E; Linkins, Robert W

2006-08-01

To evaluate the use of immunization registry data to supplement missing or incomplete vaccination data reported by immunization providers (referred to as "providers" hereafter) in the National Immunization Survey. Cross-sectional, random-digit-dialing, telephone survey to measure vaccination coverage among children aged 19 to 35 months in the United States. Four sites with mature (with >67% of provider participation in the area) immunization registries. Of the 639 children with complete household interviews, interviewers had consent from the respondents for 569 (89.0%) children to contact their providers and for 556 (87.0%) children to contact both providers and registries. Percentages of children up-to-date for vaccines based on data from providers, registries, and both sources combined. According to provider-reported data, weighted estimates of coverage for the recommended childhood vaccine series 4:3:1:3 at the 4 sites were 65.6%, 78.8%, 81.6%, and 77.0%. According to registry data, these coverage rates were consistently lower: 31.7% (P<.05), 65.4%, 71.9%, and 61.8%, respectively. When all unique vaccine doses were combined from both sources, the pooled 4:3:1:3 coverage rates increased to 72.0%, 92.0%, 88.7%, and 80.2%, respectively. The quality and completeness of vaccination histories from the registries were inconsistent and varied by sites. Vaccination coverage estimates were the lowest when only registry-reported data were used and were the highest when provider- and registry-reported histories were combined. Although registries enrolled and matched more children, vaccination histories were missing, incomplete, and inconsistent. The quality and completeness of the registry data must be improved and must be comparable across all states before further consideration may be given to supplement or replace the provider-reported National Immunization Survey data.

78 FR 33853 - Announcement for the National Registry of Evidence-Based Programs and Practices (NREPP): Open...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-05

... Practices (NREPP): Open Submission Period for Fiscal Year 2014 Background The Substance Abuse and Mental... DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration (SAMHSA) Announcement for the National Registry of Evidence-Based Programs and Practices (NREPP): Open...

Pitfalls of national routine death statistics for maternal mortality study.

PubMed

Saucedo, Monica; Bouvier-Colle, Marie-Hélène; Chantry, Anne A; Lamarche-Vadel, Agathe; Rey, Grégoire; Deneux-Tharaux, Catherine

2014-11-01

The lessons learned from the study of maternal deaths depend on the accuracy of data. Our objective was to assess time trends in the underestimation of maternal mortality (MM) in the national routine death statistics in France and to evaluate their current accuracy for the selection and causes of maternal deaths. National data obtained by enhanced methods in 1989, 1999, and 2007-09 were used as the gold standard to assess time trends in the underestimation of MM ratios (MMRs) in death statistics. Enhanced data and death statistics for 2007-09 were further compared by characterising false negatives (FNs) and false positives (FPs). The distribution of cause-specific MMRs, as assessed by each system, was described. Underestimation of MM in death statistics decreased from 55.6% in 1989 to 11.4% in 2007-09 (P < 0.001). In 2007-09, of 787 pregnancy-associated deaths, 254 were classified as maternal by the enhanced system and 211 by the death statistics; 34% of maternal deaths in the enhanced system were FNs in the death statistics, and 20% of maternal deaths in the death statistics were FPs. The hierarchy of causes of MM differed between the two systems. The discordances were mainly explained by the lack of precision in the drafting of death certificates by clinicians. Although the underestimation of MM in routine death statistics has decreased substantially over time, one third of maternal deaths remain unidentified, and the main causes of death are incorrectly identified in these data. Defining relevant priorities in maternal health requires the use of enhanced methods for MM study. © 2014 John Wiley & Sons Ltd.

Characterizing sudden death and dead-in-bed syndrome in Type 1 diabetes: analysis from two childhood-onset Type 1 diabetes registries.

PubMed

Secrest, A M; Becker, D J; Kelsey, S F; Laporte, R E; Orchard, T J

2011-03-01

Type 1 diabetes mellitus increases the risk for sudden unexplained death, generating concern that diabetes processes and/or treatments underlie these deaths. Young (< 50 years) and otherwise healthy patients who are found dead in bed have been classified as experiencing 'dead-in-bed' syndrome. We thus identified all unwitnessed deaths in two related registries (the Children's Hospital of Pittsburgh and Allegheny County) yielding 1319 persons with childhood-onset (age < 18 years) Type 1 diabetes diagnosed between 1965 and 1979. Cause of death was determined by a Mortality Classification Committee (MCC) of at least two physician epidemiologists, based on the death certificate and additional records surrounding the death. Of the 329 participants who had died, the Mortality Classification Committee has so far reviewed and assigned a final cause of death to 255 (78%). Nineteen (8%) of these were sudden unexplained deaths (13 male) and seven met dead-in-bed criteria. The Mortality Classification Committee adjudicated cause of death in the seven dead-in-bed persons as: diabetic coma (n =4), unknown (n=2) and cardiomyopathy (n=1, found on autopsy). The three dead-in-bed individuals who participated in a clinical study had higher HbA(1c) , lower BMI and higher daily insulin dose compared with both those dying from other causes and those surviving. Sudden unexplained death in Type 1 diabetes seems to be increased 10-fold and associated with male sex, while dead-in-bed individuals have a high HbA(1c) and insulin dose and low BMI. Although sample size is too small for definitive conclusions, these results suggest specific sex and metabolic factors predispose to sudden unexplained death and dead-in-bed death. © 2011 The Authors. Diabetic Medicine © 2011 Diabetes UK.

Are all metal-on-metal hip revision operations contributing to the National Joint Registry implant survival curves? : a study comparing the London Implant Retrieval Centre and National Joint Registry datasets.

PubMed

Sabah, S A; Henckel, J; Koutsouris, S; Rajani, R; Hothi, H; Skinner, J A; Hart, A J

2016-01-01

The National Joint Registry for England, Wales and Northern Ireland (NJR) has extended its scope to report on hospital, surgeon and implant performance. Data linkage of the NJR to the London Implant Retrieval Centre (LIRC) has previously evaluated data quality for hip primary procedures, but did not assess revision records. We analysed metal-on-metal hip revision procedures performed between 2003 and 2013. A total of 69 929 revision procedures from the NJR and 929 revised pairs of components from the LIRC were included. We were able to link 716 (77.1%) revision procedures on the NJR to the LIRC. This meant that 213 (22.9%) revision procedures at the LIRC could not be identified on the NJR. We found that 349 (37.6%) explants at the LIRC completed the full linkage process to both NJR primary and revision databases. Data completion was excellent (> 99.9%) for revision procedures reported to the NJR. This study has shown that only approximately one third of retrieved components at the LIRC, contributed to survival curves on the NJR. We recommend prospective registry-retrieval linkage as a tool to feedback missing and erroneous data to the NJR and improve data quality. Prospective Registry - retrieval linkage is a simple tool to evaluate and improve data quality on the NJR. ©2016 Sabah et al.

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

The Toxicology Investigators Consortium Case Registry--the 2011 experience.

PubMed

Wiegand, Timothy J; Wax, Paul M; Schwartz, Tayler; Finkelstein, Yaron; Gorodetsky, Rachel; Brent, Jeffrey

2012-12-01

administered in 106 out of 131 cases in which an envenomation occurred. There were 35 deaths recorded in the Registry during 2011. The most common associated agents, including when reported as sole agent or in combination with other agents, were opioids and analgesics (acetaminophen, aspirin, NSAIDS) with ten and eight deaths, respectively. Oxycodone was reported in six of the ten opioid-related deaths and heroin in three. Acetaminophen was the most common single agent reported overall being identified in all eight of the death cases attributed to analgesics. There were significant trends identified during 2011. Cases involving designer drugs including psychoactive bath salts and synthetic cannabinoids increased substantially from 2010 to 2011. The psychoactive bath salts were responsible for a large increase in stimulant/sympathomimetic-related cases reported to the Registry in 2011 with overall numbers doubling from 6 % of all Registry entries in 2010 to 12 % in 2011. Entries involving psychoactive drugs of abuse also increased twofold from 2010 to 2011 jumping 3 to 6 %, primarily due to increasing frequency of synthetic cannabinoid ("K2") related intoxications as 2011 progressed. The 2011 Registry included over 600 ADR's (10 % of Registry Cases) with 115 agents causing at least 2 ADR's. This is up from only 3 % of cases (116 total cases) in 2010. The ToxIC Case Registry continues to grow. At the end of 2011, over 10,000 cases had been entered into the Registry. As demonstrated by the trends identified in psychoactive bath salt and synthetic cannabinoid reports, the Registry is a valuable toxicosurveillance and research tool. The ToxIC Registry is a unique tool for identifying and characterizing confirmed cases of significant or potential toxicity or complexity to require bedside consultation by a medical toxicologist.

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.

Identifying a National Death Index Match

PubMed Central

Burchett, Bruce M.; Blazer, Dan G.

2009-01-01

Data from the National Death Index (NDI) are frequently used to determine survival status in epidemiologic or clinical studies. On the basis of selected information submitted by the investigator, NDI returns a file containing a set of candidate matches. Although NDI deems some matches as perfect, multiple candidate matches may be available for other cases. Working across data from the Duke University site of the Established Populations for Epidemiologic Studies of the Elderly (EPESE), NDI, and the Social Security Death Index (SSDI), the authors found that, for this Established Populations for Epidemiologic Studies of the Elderly cohort of 1,896 cases born before 1922 and alive as of January 1, 1999, a match on Social Security number plus additional personal information (specific combinations of last name, first name, month of birth, day of birth) resulted in agreement between NDI and Social Security Death Index dates of death 94.7% of the time, while comparable agreement was found for only 12.3% of candidate decedents who did not have the required combination of information. Thus, an easy to apply algorithm facilitates accurate identification of NDI matches. PMID:19567777

A Good Idea May Not Be Good Enough: Stakeholder Buy In to QuitConnect, a National Smokers' Registry.

PubMed

Macauda, Mark M; Thrasher, James F; Saul, Jessie E; Celestino, Paula; Cummings, K Michael; Strayer, Scott M

2017-01-01

To examine interest and concerns among those who fund and operate state-run smoking cessation helplines (quitlines) about the concept of creating a centralized smokers' registry that could be used to reengage smokers after they receive initial quitline support services. We conducted 3, hour-long focus groups with stakeholders, covering the perceived benefits and barriers to creating a smokers' registry. The focus groups were conducted via telephone. Three groups participated: quitline service providers (n = 14), quitline funders (n = 9), and national quitline partners (n = 8). Data collection: Focus groups were recorded, transcribed, and coded for major relevant themes. Analysis Strategies: We used a grounded theory approach. Stakeholders were generally positive about the concept of a centralized smokers' registry (ie, QuitConnect), especially with its potential to link relapsed smokers to ongoing research studies designed to help smokers achieve abstinence from tobacco. However, stakeholders expressed concern about QuitConnect duplicating services already offered by state quitlines. Despite a common goal, many state quitline stakeholders had strong reservations about the creation of a centralized smokers' registry unless they could see clear evidence that the registry added value and was not duplicative of their existing services.

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.

Pattern of suicides in 2009: data from the National Suicide Registry Malaysia.

PubMed

Ali, Nor Hayati; Zainun, Khairul Anuar; Bahar, Norharlina; Haniff, Jamaiyah; Hamid, Abdul Muneer; Bujang, Mohamad Adam Hj; Mahmood, Mohd Shah

2014-06-01

The National Suicide Registry Malaysia (NSRM) is a nationwide system that captures data on completed suicides in Malaysia from all forensic departments under the purview of the Ministry of Health Malaysia. This paper examines all suicidal deaths reported to the NSRM from 1 January 2009 to 31 December 2009. The relevant variables were recorded in the paper-based Case Report Form (CRF) and then entered into the online reporting system for analysis. The overall suicide rate for 2009 was 1.18 per 100,000 population (n = 328). The age range was 14-94 years, with a median of 37 (IQR 24) years. There were more men than women, the gender ratio being 2.9:1 (males : females), and the majority (89% or 293/328) were Malaysian citizens. Ethnicity-wise, Indians had the highest suicide rate of 3.67 per 100,000. The Malays and Bumiputera of Sabah and Sarawak had lower rates of 0.32 to 0.37 per 100,000. Mental illness was reported in 22% (72/328) of the cases and physical illnesses in 20.4% (67/328). Previous suicide attempts were reported in 15.5% (51/328) of cases. History of substance abuse was present in 28.7% (83/328). Life events were positive in 41.2% (135/328) of cases. Malaysia is able to generate statistics on suicide by enhancing the collaboration between forensic, psychiatry and clinical research agencies. These trends should be monitored to gain a better understanding of suicide trends. Copyright © 2012 Wiley Publishing Asia Pty Ltd.

Public health burden of sudden cardiac death in the United States.

PubMed

Stecker, Eric C; Reinier, Kyndaron; Marijon, Eloi; Narayanan, Kumar; Teodorescu, Carmen; Uy-Evanado, Audrey; Gunson, Karen; Jui, Jonathan; Chugh, Sumeet S

2014-04-01

Sudden cardiac death (SCD) is a leading cause of death in the United States, but the relative public health burden is unknown. We estimated the burden of premature death from SCD and compared it with other diseases. Analyses were based on the following data sources (using most recent sources that provided appropriately stratified data): (1) leading causes of death among men and women from 2009 US death certificate reporting; (2) individual cancer mortality rates from 2008 death certificate reporting from the Centers for Disease Control and Prevention's National Program of Cancer Registries; (3) county, state, and national population data for 2009 from the US Census Bureau; and (4) SCD rates from the Oregon Sudden Unexpected Death Study (SUDS) population-based surveillance study of SCD between 2002 and 2004. Cases were identified from multiple sources in a prospectively designed surveillance program. Incidence, counts, and years of potential life lost for SCD and other major diseases were compared. The age-adjusted national incidence of SCD was 60 per 100 000 population (95% confidence interval, 54-66 per 100,000). The burden of premature death for men (2.04 million years of potential life lost; 95% uncertainty interval, 1.86-2.23 million) and women (1.29 million years of potential life lost; 95% uncertainty interval, 1.13-1.45 million) was greater for SCD than for all individual cancers and most other leading causes of death. The societal burden of SCD is high relative to other major causes of death. Accordingly, improved national surveillance with the goal of optimizing and monitoring SCD prevention and treatment should be a high priority.

Surveillance for violent deaths - National Violent Death Reporting System, 16 states, 2010.

PubMed

Parks, Sharyn E; Johnson, Linda L; McDaniel, Dawn D; Gladden, Matthew

2014-01-17

An estimated 55,000 persons die annually in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 16 U.S. states for 2010. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2010. NVDRS collects data regarding violent deaths obtained from death certificates, coroner/medical examiner reports, law enforcement reports, and secondary sources (e.g., child fatality review team data, supplementary homicide reports, hospital data, and crime laboratory data). NVDRS data collection began in 2003 with seven states (Alaska, Maryland, Massachusetts, New Jersey, Oregon, South Carolina, and Virginia) participating; six states (Colorado, Georgia, North Carolina, Oklahoma, Rhode Island, and Wisconsin) joined in 2004, four (California, Kentucky, New Mexico, and Utah) in 2005, and two in 2010 (Ohio and Michigan), for a total of 19 states. This report includes data from 16 states that collected statewide data in 2010; data from California are not included in this report because data were not collected after 2009. Ohio and Michigan were excluded because data collection, which began in 2010, did not occur statewide until 2011. For 2010, a total of 15,781 fatal incidents involving 16,186 deaths were captured by NVDRS in the 16 states included in this report. The majority (62.8%) of deaths were suicides, followed by homicides and deaths involving legal intervention (i.e., deaths caused by law enforcement and other persons with legal authority to use deadly force, excluding legal executions) (24.4%), deaths of undetermined intent (12.2%), and unintentional firearm deaths (0.7%). Suicides occurred at higher rates among males, non-Hispanic whites, American Indians/Alaska Natives, and persons aged 45-54 years. Suicides most often occurred in a house or

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

Architecture for Variable Data Entry into a National Registry.

PubMed

Goossen, William

2017-01-01

The Dutch perinatal registry required a new architecture due to the large variability of the submitted data from midwives and hospitals. The purpose of this article is to describe the healthcare information architecture for the Dutch perinatal registry. requirements analysis, design, development and testing. The architecture is depicted for its components and preliminary test results. The data entry and storage work well, the Data Marts are under preparation.

The National Anesthesia Clinical Outcomes Registry.

PubMed

Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

2015-12-01

The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses.

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.

Registry of transcatheter aortic-valve implantation in high-risk patients.

PubMed

Gilard, Martine; Eltchaninoff, Hélène; Iung, Bernard; Donzeau-Gouge, Patrick; Chevreul, Karine; Fajadet, Jean; Leprince, Pascal; Leguerrier, Alain; Lievre, Michel; Prat, Alain; Teiger, Emmanuel; Lefevre, Thierry; Himbert, Dominique; Tchetche, Didier; Carrié, Didier; Albat, Bernard; Cribier, Alain; Rioufol, Gilles; Sudre, Arnaud; Blanchard, Didier; Collet, Frederic; Dos Santos, Pierre; Meneveau, Nicolas; Tirouvanziam, Ashok; Caussin, Christophe; Guyon, Philippe; Boschat, Jacques; Le Breton, Herve; Collart, Frederic; Houel, Remi; Delpine, Stephane; Souteyrand, Geraud; Favereau, Xavier; Ohlmann, Patrick; Doisy, Vincent; Grollier, Gilles; Gommeaux, Antoine; Claudel, Jean-Philippe; Bourlon, Francois; Bertrand, Bernard; Van Belle, Eric; Laskar, Marc

2012-05-03

Transcatheter aortic-valve implantation (TAVI) is an emerging intervention for the treatment of high-risk patients with severe aortic stenosis and coexisting illnesses. We report the results of a prospective multicenter study of the French national transcatheter aortic-valve implantation registry, FRANCE 2. All TAVIs performed in France, as listed in the FRANCE 2 registry, were prospectively included in the study. The primary end point was death from any cause. A total of 3195 patients were enrolled between January 2010 and October 2011 at 34 centers. The mean (±SD) age was 82.7±7.2 years; 49% of the patients were women. All patients were highly symptomatic and were at high surgical risk for aortic-valve replacement. Edwards SAPIEN and Medtronic CoreValve devices were implanted in 66.9% and 33.1% of patients, respectively. Approaches were either transarterial (transfemoral, 74.6%; subclavian, 5.8%; and other, 1.8%) or transapical (17.8%). The procedural success rate was 96.9%. Rates of death at 30 days and 1 year were 9.7% and 24.0%, respectively. At 1 year, the incidence of stroke was 4.1%, and the incidence of periprosthetic aortic regurgitation was 64.5%. In a multivariate model, a higher logistic risk score on the European System for Cardiac Operative Risk Evaluation (EuroSCORE), New York Heart Association functional class III or IV symptoms, the use of a transapical TAVI approach, and a higher amount of periprosthetic regurgitation were significantly associated with reduced survival. This prospective registry study reflected real-life TAVI experience in high-risk elderly patients with aortic stenosis, in whom TAVI appeared to be a reasonable option. (Funded by Edwards Lifesciences and Medtronic.).

Characterising sudden death and dead-in-bed syndrome in Type 1 diabetes: Analysis from 2 childhood-onset Type 1 diabetes registries

PubMed Central

Secrest, A. M.; Becker, D. J.; Kelsey, S. F.; LaPorte, R. E.; Orchard, T. J.

2011-01-01

Aims Type 1 diabetes mellitus increases the risk for sudden unexplained death (SUD), generating concern that diabetes processes and/or treatments underlie these deaths. Young (<50 yrs) and otherwise healthy patients who are found dead in bed have been classified as experiencing “dead in bed” (DIB) syndrome. Methods We thus identified all un-witnessed deaths in two related registries (Children’s Hospital of Pittsburgh and Allegheny County) yielding 1,319 persons with childhood-onset (age<18 yrs) Type 1 DM diagnosed between 1965 and 1979. Cause of death was determined by a mortality classification committee (MCC) of at least 2 physician epidemiologists, based on the death certificate and additional records surrounding the death. Results Of the 329 participants who had died, the MCC has so far reviewed and assigned a final cause of death to 255 (78%). Nineteen (8%) of these were SUDs (13 male), and 7 met DIB criteria. The MCC adjudicated cause of death in the 7 DIB persons as: diabetic coma (n=4), unknown (n=2), and cardiomyopathy (n=1, found on autopsy). The 3 DIB individuals who participated in a clinical study had higher HbA1c, lower BMI, and higher daily insulin dose compared to both those dying from other causes and those surviving. Conclusions SUD in Type 1 DM seems to be increased 10-fold and associated with male sex, while DIB individuals have a high HbA1c and insulin dose, and low BMI. Though sample size is too small for definitive conclusions, these results suggest specific sex and metabolic factors predispose to SUD and DIB. PMID:21309837

Measles deaths in Nepal: estimating the national case-fatality ratio.

PubMed

Joshi, Anand B; Luman, Elizabeth T; Nandy, Robin; Subedi, Bal K; Liyanage, Jayantha B L; Wierzba, Thomas F

2009-06-01

To estimate the case-fatality ratio (CFR) for measles in Nepal, determine the role of risk factors, such as political instability, for measles mortality, and compare the use of a nationally representative sample of outbreaks versus routine surveillance or a localized study to establish the national CFR (nCFR). This was a retrospective study of measles cases and deaths in Nepal. Through two-stage random sampling, we selected 37 districts with selection probability proportional to the number of districts in each region, and then randomly selected within each district one outbreak among all those that had occurred between 1 March and 1 September 2004. Cases were identified by interviewing a member of each and every household and tracing contacts. Bivariate analyses were performed to assess the risk factors for a high CFR and determine the time from rash onset until death. Each factor's contribution to the CFR was determined through multivariate logistic regression. From the number of measles cases and deaths found in the study we calculated the total number of measles cases and deaths for all of Nepal during the study period and in 2004. We identified 4657 measles cases and 64 deaths in the study period and area. This yielded a total of about 82 000 cases and 900 deaths for all outbreaks in 2004 and a national CFR of 1.1% (95% confidence interval, CI: 0.5-2.3). CFR ranged from 0.1% in the eastern region to 3.4% in the mid-western region and was highest in politically insecure areas, in the Ganges plains and among cases < 5 years of age. Vitamin A treatment and measles immunization were protective. Most deaths occurred during the first week of illness. To our knowledge, this is the first CFR study based on a nationally representative sample of measles outbreaks. Routine surveillance and studies of a single outbreak may not yield an accurate nCFR. Increased fatalities associated with political insecurity are a challenge for health-care service delivery. The short period

The Toxicology Investigators Consortium Case Registry--the 2012 experience.

PubMed

Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey

2013-12-01

In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab

[A scale for early assessment of risk of death and myocardial infarction during initial hospitalization of patients with acute coronary syndromes (based on data from the RECORD registry)].

PubMed

Érlikh, A D

2010-01-01

Independent predictors of death and death or myocardial infarction (MI) during initial hospitalization of patients with acute coronary syndromes (ACS) were determined using database of Russian independent ACS registry RECORD. These predictors (admission Killip class II, ST-segment elevation 1 mm, systolic blood pressure 100 mm Hg, hemoglobin <110 g/L, age 65 years, history of diabetes) were attributed equal weight (1 point) and combined in a prognostic scale for assessment of risk of inhospital death and death or MI. The scale did not include markers of necrosis, and the most time consuming component was measurement of hemoglobin. Sensitivity and specificity of risk scores for prediction of death were 78.5%. The use of GRACE score in this group of patients gave similar results. These preliminary data require confirmation on larger populations of patients with ACS.

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.

Building a National Heritage Registry for the Sudan: the Friedrich W. Hinkel Archive Digitization Project

NASA Astrophysics Data System (ADS)

Lawrenz, S.

2017-08-01

The Republic of the Sudan is home to outstanding and diverse cultural heritage ranging from Neolithic sites of human activity and settlement to historic sites of the 19th and 20th century. While certain phases of the Sudan's cultural heritage such as the period of Egyptian influence during the second and first millennium B.C. have been the focus of archaeological research since the 19th century, other aspects of the country's rich history have remained largely unknown locally and internationally due to a lack of documentation and registration of such sites. Since 2014, the German Archaeological Institute (DAI) has been engaged in an effort to support the creation of a national heritage registry in close cooperation with the National Corporation for Antiquities and Museums (NCAM) by digitizing the archive of German architect Friedrich W. Hinkel and engaging in capacity building measures focusing on analog and digital data curation. The archive contains structured information (photos, drawings, maps and assembled written documentation) regarding over 14,000 archaeological and historical sites in the Sudan using an alphanumeric coding system that allows for easy integration of data in a digital environment such as the DAI's IT infrastructure, the iDAI.world. As such the data assembled by Hinkel will serve as the basis of the national heritage registry currently in development.

Cancer incidence estimates at the national and district levels in Colombia.

PubMed

Piñeros, Marion; Ferlay, Jacques; Murillo, Raúl

2006-01-01

To estimate national and district cancer incidence for 18 major cancer sites in Colombia. National and district incidence was estimated by applying a set of age, sex and site-specific incidence/mortality ratios, obtained from a population-based cancer registry, to national and regional mortality. The work was done in Bogotá (Colombia) and Lyon (France) between May 2003 and August 2004. The annual total number of cases expected (all cancers but skin) was 17 819 in men and 18 772 in women. Among males the most frequent cancers were those of the prostate (45.8 per 100 000), stomach (36.0), and lung (20.0). In females the most frequent were those of the cervix uteri (36.8 per 100 000), breast (30.0), and stomach (20.7). Districts with the lowest death certification coverage yielded the highest incidence rates. In the absence of national population-based cancer registry data, estimates of incidence provide valuable information at national and regional levels. As mortality data are an important source for the estimation,the quality of death certification should be considered as a possible cause of bias.

[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.

Implant and clinical characteristics for pediatric and congenital heart patients in the national cardiovascular data registry implantable cardioverter defibrillator registry.

PubMed

Jordan, Christopher P; Freedenberg, Vicki; Wang, Yongfei; Curtis, Jeptha P; Gleva, Marye J; Berul, Charles I

2014-12-01

In 2010, the National Cardiovascular Data Registry enhanced pediatric, nonatherosclerotic structural heart disease and congenital heart disease (CHD) data collection. This report characterizes CHD and pediatric patients undergoing implantable cardioverter defibrillator implantation. In this article, we report implantable cardioverter defibrillator procedures (April 2010 to December 2012) in the registry for 2 cohorts: (1) all patients with CHD (atrial septal defect, ventricular septal defect, tetralogy of Fallot, Ebstein anomaly, transposition of the great vessels, and common ventricle) and (2) patients <21 years. We evaluated indications and characteristics to include transvenous and nontransvenous lead implants, CHD type, and New York Heart Association class. There were 3139 CHD procedures, 1601 for patients <21 years and 126 for CHD <21 years. Implantable cardioverter defibrillator indications for patients with CHD were primary prevention in 1943 (61.9%) and secondary prevention in 1107 (35.2%). Pediatric patients had 935 (58.4%) primary prevention and 588 (36.7%) secondary prevention devices. Primary prevention had higher New York Heart Association class. Nontransvenous age (35.9 ± 23.2 versus 40.1 ± 24.6 years; P=0.05) and nontransvenous height (167.1 ± 18.9 cm; range, 53-193 cm versus 170.4 ± 13.1 cm; range, 61-203 cm; P<0.01) were lower than for transvenous patients. CHD and pediatrics had similar rates of transvenous (97%) and nontransvenous (3%) leads and did not differ from the overall registry. Transposition of the great vessels and common ventricle had higher rates of nontransvenous leads. Primary prevention exceeds secondary prevention for CHD and pediatrics. Nontransvenous lead patients were younger, with higher rates of transposition of the great vessels and common ventricle patients compared with transvenous lead patients. © 2014 American Heart Association, Inc.

Rates and correlates of undetermined deaths among African Americans: results from the National Violent Death Reporting System.

PubMed

Huguet, Nathalie; Kaplan, Mark S; McFarland, Bentson H

2012-04-01

Little is known about the factors associated with undetermined death classifications among African Americans. In this study, the rates of undetermined deaths were assessed, the prevalence of missing information was estimated, and whether the circumstances preceding death differ by race were examined. Data were derived from the 2005-2008 National Violent Death Reporting System. African Americans had higher prevalence of missing information than Whites. African Americans classified as undetermined deaths were more likely to be older, women, never married/single, to have had a blood alcohol content at or above the legal limit, and to have had a substance abuse problem. The results suggest that racial differences in the preponderance and the type of evidence surrounding the death may affect death classification. © 2012 The American Association of Suicidology.

Long-term mortality and causes of death in isolated GHD, ISS, and SGA patients treated with recombinant growth hormone during childhood in Belgium, The Netherlands, and Sweden: preliminary report of 3 countries participating in the EU SAGhE study.

PubMed

Sävendahl, Lars; Maes, Marc; Albertsson-Wikland, Kerstin; Borgström, Birgit; Carel, Jean-Claude; Henrard, Séverine; Speybroeck, Niko; Thomas, Muriel; Zandwijken, Gladys; Hokken-Koelega, Anita

2012-02-01

The long-term mortality in adults treated with recombinant GH during childhood has been poorly investigated. Recently released data from the French part of the European Union Safety and Appropriateness of GH treatments in Europe (EU SAGhE) study have raised concerns on the long-term safety of GH treatment. To report preliminary data on long-term vital status and causes of death in patients with isolated GH deficiency or idiopathic short stature or born small for gestational age treated with GH during childhood, in Belgium, The Netherlands, and Sweden. Data were retrieved from national registries of GH-treated patients and vital status from National Population Registries. Causes of death were retrieved from a National Cause of Death Register (Sweden), Federal and Regional Death Registries (Belgium), or individual patient records (The Netherlands). All patients diagnosed with isolated GH deficiency or idiopathic short stature or born small for gestational age started on recombinant GH during childhood from 1985-1997 and who had attained 18 yr of age by the end of 2010 were included. Vital status was available for approximately 98% of these 2,543 patients, corresponding to 46,556 person-years of observation. Vital status, causes of death, age at death, year of death, duration of GH treatment, and mean GH dose during treatment were assessed. Among 21 deaths identified, 12 were due to accidents, four were suicides, and one patient each died from pneumonia, endocrine dysfunction, primary cardiomyopathy, deficiency of humoral immunity, and coagulation defect. In these cohorts, the majority of deaths (76%) were caused by accidents or suicides. Importantly, none of the patients died from cancer or from a cardiovascular disease.

Death and Dialysis After Transcatheter Aortic Valve Replacement: An Analysis of the STS/ACC TVT Registry.

PubMed

Hansen, James W; Foy, Andrew; Yadav, Pradeep; Gilchrist, Ian C; Kozak, Mark; Stebbins, Amanda; Matsouaka, Roland; Vemulapalli, Sreekanth; Wang, Alice; Wang, Dee Dee; Eng, Marvin H; Greenbaum, Adam B; O'Neill, William O

2017-10-23

The authors sought to elucidate the true incidence of renal replacement therapy (RRT) after transcatheter aortic valve replacement (TAVR). There is a wide discrepancy in the reported rate of RRT after TAVR (1.4% to 40%). The true incidence of RRT after TAVR is unknown. The STS/ACC TVT (Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy) registry was linked to the Centers for Medicare & Medicaid database to identify all patients that underwent TAVR from November 2011 through September 2015 and their outcomes. The authors compared rates of death, new RRT, and a composite of both as a function of pre-procedure glomerular filtration rate (GFR), both in stages of chronic kidney disease (CKD), as well as on a continuous scale. Pre-procedure GFR is associated with the risk of death and new RRT after TAVR when GFR is <60 ml/min/m 2 , and increases significantly when GFR falls below 30 ml/min/m 2 . Incremental increases in GFR of 5 ml/min/m 2 were statistically significant (unadjusted hazard ratio: 0.71; p < 0.001) at 30 days, and continued to be significant at 1 year when pre-procedure GFR was <60 ml/min/m 2 . One in 3 CKD stage 4 patients will be dead within 1 year, with 14.6% (roughly 1 in 6) requiring dialysis. In CKD stage 5, more than one-third of patients will require RRT within 30 days; nearly two-thirds will require RRT at 1 year. In both unadjusted and adjusted analysis, pre-procedural GFR was associated with the outcomes of death and new RRT. Increasing CKD stage leads to an increased risk of death and/or RRT. Continuous analysis showed significant differences in outcomes in all levels of CKD when GFR was <60 ml/min/m 2 . Pre-procedure GFR should be considered when selecting CKD patients for TAVR. Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

A Suggested Model for Building Robust Biomedical Implants Registries.

PubMed

Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa

2017-01-01

Registries are an essential source of information for clinical and non-clinical decision-makers; because they provide evidence for post-market clinical follow-up and early detection of safety signals for biomedical implants. Yet, many of todays biomedical implants registries are facing a variety of challenges relating to a poorly designed dataset, the reliability of inputted data and low clinician and patient participation. The purpose of this paper is to present a best practice model for the implementation and use of biomedical implants registries to monitor the safety and effectiveness of implantable medical devices. Based on a literature review and an analysis of multiple national relevant registries, we identified six factors that address contemporary challenges and are believed to be the keys for building a successful biomedical implants registry, which include: sustainable development, international comparability, data reliability, purposeful design, ease of patient participation, and collaborative development at the national level.

The impact of smoke exposure on the clinical phenotype of alpha-1 antitrypsin deficiency in Ireland: exploiting a national registry to understand a rare disease.

PubMed

O'Brien, M Emmet; Pennycooke, Kevin; Carroll, Tomás P; Shum, Jonathan; Fee, Laura T; O'Connor, Catherine; Logan, P Mark; Reeves, Emer P; McElvaney, Noel G

2015-05-01

Individuals with Alpha-1 antitrypsin deficiency (AATD) have mutations in the SERPINA1 gene causing genetic susceptibility to early onset lung and liver disease that may result in premature death. Environmental interactions have a significant impact in determining the disease phenotype and outcome in AATD. The aim of this study was to assess the impact of smoke exposure on the clinical phenotype of AATD in Ireland. Clinical demographics and available thoracic computerised tomography (CT) imaging were detected from 139 PiZZ individuals identified from the Irish National AATD Registry. Clinical information was collected by questionnaire. Data was analysed to assess AATD disease severity and evaluate predictors of clinical phenotype. Questionnaires were collected from 107/139 (77%) and thoracic CT evaluation was available in 72/107 (67.2%). 74% of respondents had severe Chronic Obstructive Pulmonary Disease (COPD) (GOLD stage C or D). Cigarette smoking was the greatest predictor of impairment in FEV1 and DLCO (%predicted) and the extent of emphysema correlated most significantly with DLCO. Interestingly the rate of FEV1 decline was similar in ex-smokers when compared to never-smokers. Passive smoke exposure in childhood resulted in a greater total pack-year smoking history. Radiological evidence of bronchiectasis was a common finding and associated with increasing age. The Irish National AATD Registry facilitates clinical and basic science research of this condition in Ireland. This study illustrates the detrimental effect of smoke exposure on the clinical phenotype of AATD in Ireland and the benefit of immediate smoking cessation at any stage of lung disease.

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

The rationale and design of the national familial hypercholesterolemia registries in Turkey: A-HIT1 and A-HIT2 studies.

PubMed

Kayıkçıoğlu, Meral; Tokgözoğlu, Lale

2017-04-01

Familial hypercholesterolemia (FH) is a genetic disease characterized by extremely high levels of cholesterol, leading to premature atherosclerosis. Although many countries have already addressed the burden of FH by means of national registries, Turkey has no national FH registry or national screening program to detect FH. Creation of a series of FH registries is planned as part of Turkish FH Initiative endorsed by the Turkish Society of Cardiology to meet this need. This article provides detailed information on the rationale and design of the first 2 FH registries (A-HIT1 and A-HIT2). A-HIT1 is a nationwide survey of adult homozygous FH (HoFH) patients undergoing low-density lipoprotein (LDL) apheresis (LA) in Turkey. A-HIT1 will provide insight into the clinical status of HoFH patients undergoing LA. Primary objective of this cross-sectional study is to identify how HoFH patients on LA are managed. Inclusion criteria are age >12 years, diagnosis of HoFH, and regular LA treatment. All available apheresis centers were electronically invited to participate in the study. The principal physicians of each center will respond to a questionnaire regarding their attitude toward LA. For each patient, another questionnaire will be used to collect data on clinical status, medication use, and disease data. In addition, patients will be asked to complete self-report questionnaires that provide information on quality of life, disease-related anxiety, and depression. A-HIT2 is a registry of adult FH patients presenting at outpatient clinics. At least 1000 FH patients will be recruited from 30 outpatient clinics representing the 12 statistical regions in Turkey based on the EU NUTS classification. Sites specializing in cardiology, internal medicine, and endocrinology were invited to participate. The primary objective of this cross-sectional study is to determine clinical status and management of patients in Turkey diagnosed with FH. Eligibility for screening was defined as having

Cancer deaths and cases attributable to lifestyle factors and infections in China, 2013.

PubMed

Islami, F; Chen, W; Yu, X Q; Lortet-Tieulent, J; Zheng, R; Flanders, W D; Xia, C; Thun, M J; Gapstur, S M; Ezzati, M; Jemal, A

2017-10-01

The burden of cancer in China is high, and it is expected to further increase. Information on cancers attributable to potentially modifiable risk factors is essential in planning preventive measures against cancer. We estimated the number and proportion of cancer deaths and cases attributable to ever-smoking, second-hand smoking, alcohol drinking, low fruit/vegetable intake, excess body weight, physical inactivity, and infections in China, using contemporary data from nationally representative surveys and cancer registries. The number of cancer deaths and cases in 2013 were obtained from the National Central Cancer Registry of China and data on most exposures were obtained from the China National Nutrition and Health Survey 2002 or 2006 and Global Adult Tobacco Smoking 2010. We used a bootstrap simulation method to calculate the number and proportion of cancer deaths and cases attributable to risk factors and their corresponding 95% confidence intervals (CIs), allowing for uncertainty in data. Approximately 718 000 (95% CI 702 100-732 200) cancer deaths in men and 283 100 (278 800-288 800) cancer deaths in women were attributable to the studied risk factors, accounting for 52% of all cancer deaths in men and 35% in women. The numbers for incident cancer cases were 952 500 (95% CI 934 200-971 400) in men and 442 700 (437 200-447 900) in women, accounting for 47% of all incident cases in men and 28% in women. The greatest proportions of cancer deaths attributable to risk factors were for smoking (26%), HBV infection (12%), and low fruit/vegetable intake (7%) in men and HBV infection (7%), low fruit/vegetable intake (6%), and second-hand smoking (5%) in women. Effective public health interventions to eliminate or reduce exposure from these risk factors, notably tobacco control and vaccinations against carcinogenic infections, can have considerable impact on reducing the cancer burden in China. © The Author 2017. Published by Oxford University

The value of trauma registries.

PubMed

Moore, Lynne; Clark, David E

2008-06-01

Trauma registries are databases that document acute care delivered to patients hospitalised with injuries. They are designed to provide information that can be used to improve the efficiency and quality of trauma care. Indeed, the combination of trauma registry data at regional or national levels can produce very large databases that allow unprecedented opportunities for the evaluation of patient outcomes and inter-hospital comparisons. However, the creation and upkeep of trauma registries requires a substantial investment of money, time and effort, data quality is an important challenge and aggregated trauma data sets rarely represent a population-based sample of trauma. In addition, trauma hospitalisations are already routinely documented in administrative hospital discharge databases. The present review aims to provide evidence that trauma registry data can be used to improve the care dispensed to victims of injury in ways that could not be achieved with information from administrative databases alone. In addition, we will define the structure and purpose of contemporary trauma registries, acknowledge their limitations, and discuss possible ways to make them more useful.

Place of death and its determinants for patients with cancer in Singapore: an analysis of data from the Singapore Cancer Registry, 2000-2009.

PubMed

Hong, Ching Ye; Chow, Khuan Yew; Poulose, Jissy; Jin, Ai Zhen; Devi, Anju; Chee, Eddie Meng Fai; Goh, Cynthia

2011-10-01

To describe the place of death for patients with cancer in Singapore from 2000 to 2009, and determinants of death at home and in in-patient hospice compared to death in hospital. Cross-sectional analysis of all patients registered with the Singapore Cancer Registry who had died in the study period (N=52120). Places of death were grouped as homes, in-patient hospices, hospitals and others. For determinants of death at home and in in-patient hospice, covariates adjusted for in logistic regression analyses were age group, gender, ethnic group, primary tumour site, stage at diagnosis, duration and cause of death. In the 10-year period, 52.9% of patients with cancer had died in the hospital, 30.3% died at home and 10.7% in in-patient hospice. Determinants of death at home were older age, female (odds ratio OR 1.23, 95% confidence interval, CI 1.17-1.29), Malay (OR 2.28, 95% CI 2.13-2.44), cancers of the colo-rectum, liver, stomach, pancreas and nasopharynx (compared to lung cancer), duration of illness of 1-5 years (OR 1.40, 95% CI 1.34-1.48), primary cause of death being 'neoplasms' (OR 2.97, 95% CI 2.79-3.17). Determinants of death in in-patient hospice were older age, distant metastasis (OR 1.35, 95% CI 1.21-1.50) and primary cause of death being 'neoplasms' (OR 20.07, 95% CI 16.05-25.09). Knowledge about place of death and its determinants will facilitate the planning of healthcare services to enable patients with terminal cancer to die at home and in in-patient hospices, thereby avoiding inappropriate hospitalization at the end of life.

A case study: Death Valley National Monument California-Nevada

Treesearch

Daniel Hamson; Ristau Toni

1979-01-01

With passage of the Mining in the Parks Act (P.L. 94-429) in 1976, the National Park Service, Department of the Interior, was given the responsibility of preparing a report to Congress outlining the environmental consequences of mining on claims within Death Valley National Monument. In addition, the Secretary of the Interior is required to formulate a recommendation...

Reference Standards for Cardiorespiratory Fitness Measured With Cardiopulmonary Exercise Testing Using Cycle Ergometry: Data From the Fitness Registry and the Importance of Exercise National Database (FRIEND) Registry.

PubMed

Kaminsky, Leonard A; Imboden, Mary T; Arena, Ross; Myers, Jonathan

2017-02-01

The importance of cardiorespiratory fitness (CRF) is well established. This report provides newly developed standards for CRF reference values derived from cardiopulmonary exercise testing (CPX) using cycle ergometry in the United States. Ten laboratories in the United States experienced in CPX administration with established quality control procedures contributed to the "Fitness Registry and the Importance of Exercise: A National Database" (FRIEND) Registry from April 2014 through May 2016. Data from 4494 maximal (respiratory exchange ratio, ≥1.1) cycle ergometer tests from men and women (20-79 years) from 27 states, without cardiovascular disease, were used to develop these references values. Percentiles of maximum oxygen consumption (VO 2max ) for men and women were determined for each decade from age 20 years through age 79 years. Comparisons of VO 2max were made to reference data established with CPX data from treadmill data in the FRIEND Registry and previously published reports. As expected, there were significant differences between sex and age groups for VO 2max (P<.01). For cycle tests within the FRIEND Registry, the 50th percentile VO 2max of men and women aged 20 to 29 years declined from 41.9 and 31.0 mLO 2 /kg/min to 19.5 and 14.8 mLO 2 /kg/min for ages 70 to 79 years, respectively. The rate of decline in this cohort was approximately 10% per decade. The FRIEND Registry reference data will be useful in providing more accurate interpretations for the US population of CPX-measured VO 2max from exercise tests using cycle ergometry compared with previous approaches based on estimations of standard differences from treadmill testing reference values. Copyright © 2016 Mayo Foundation for Medical Education and Research. All rights reserved.

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

Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry

PubMed Central

Dicianno, Brad E.; Karmarkar, Amol; Houtrow, Amy; Crytzer, Theresa M.; Cushanick, Katelyn M.; McCoy, Andrew; Wilson, Pamela; Chinarian, James; Neufeld, Jacob; Smith, Kathryn; Collins, Diane M.

2017-01-01

Objective To provide descriptive data on ambulatory ability and muscle strength in a large cohort of individuals with spina bifida enrolled in a National Spina Bifida Patient Registry (NSBPR) and to investigate factors associated with ambulatory status. Design Cross-sectional analysis of data from a multi-site patient registry Results Descriptive analysis of mobility variables for 2604 individuals with spina bifida age 5 and above are presented from 19 sites in the United States. Analysis of a subset of NSBPR data from 380 individuals from three sites accompanied by data from a specialized spina bifida electronic medical record revealed that those with no history of a shunt, lower motor level, and no history of hip or knee contracture release surgery were more likely to be ambulatory at the community level than at the household or wheelchair level. Conclusion This study is the first to examine factors associated with ambulatory status in a large sample of individuals with myelomeningocele and non-myelomeningocele subtypes of SB. Results of this study delineate the breadth of strength and functional abilities within the different age groups and subtypes of SB. The results may inform clinicians of the characteristics of those with varying ambulatory abilities. PMID:26488146

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.

Developing Statistical Models to Assess Transplant Outcomes Using National Registries: The Process in the United States.

PubMed

Snyder, Jon J; Salkowski, Nicholas; Kim, S Joseph; Zaun, David; Xiong, Hui; Israni, Ajay K; Kasiske, Bertram L

2016-02-01

Created by the US National Organ Transplant Act in 1984, the Scientific Registry of Transplant Recipients (SRTR) is obligated to publicly report data on transplant program and organ procurement organization performance in the United States. These reports include risk-adjusted assessments of graft and patient survival, and programs performing worse or better than expected are identified. The SRTR currently maintains 43 risk adjustment models for assessing posttransplant patient and graft survival and, in collaboration with the SRTR Technical Advisory Committee, has developed and implemented a new systematic process for model evaluation and revision. Patient cohorts for the risk adjustment models are identified, and single-organ and multiorgan transplants are defined, then each risk adjustment model is developed following a prespecified set of steps. Model performance is assessed, the model is refit to a more recent cohort before each evaluation cycle, and then it is applied to the evaluation cohort. The field of solid organ transplantation is unique in the breadth of the standardized data that are collected. These data allow for quality assessment across all transplant providers in the United States. A standardized process of risk model development using data from national registries may enhance the field.

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.

Malaysian Twin Registry.

PubMed

Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

2013-02-01

The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.

Acute myocardial infarction: a comparison of short-term survival in national outcome registries in Sweden and the UK

PubMed Central

Chung, Sheng-Chia; Gedeborg, Rolf; Nicholas, Owen; James, Stefan; Jeppsson, Anders; Wolfe, Charles; Heuschmann, Peter; Wallentin, Lars; Deanfield, John; Timmis, Adam; Jernberg, Tomas; Hemingway, Harry

2014-01-01

Summary Background International research for acute myocardial infarction lacks comparisons of whole health systems. We assessed time trends for care and outcomes in Sweden and the UK. Methods We used data from national registries on consecutive patients registered between 2004 and 2010 in all hospitals providing care for acute coronary syndrome in Sweden and the UK. The primary outcome was all-cause mortality 30 days after admission. We compared effectiveness of treatment by indirect casemix standardisation. This study is registered with ClinicalTrials.gov, number NCT01359033. Findings We assessed data for 119 786 patients in Sweden and 391 077 in the UK. 30-day mortality was 7·6% (95% CI 7·4–7·7) in Sweden and 10·5% (10·4–10·6) in the UK. Mortality was higher in the UK in clinically relevant subgroups defined by troponin concentration, ST-segment elevation, age, sex, heart rate, systolic blood pressure, diabetes mellitus status, and smoking status. In Sweden, compared with the UK, there was earlier and more extensive uptake of primary percutaneous coronary intervention (59% vs 22%) and more frequent use of β blockers at discharge (89% vs 78%). After casemix standardisation the 30-day mortality ratio for UK versus Sweden was 1·37 (95% CI 1·30–1·45), which corresponds to 11 263 (95% CI 9620–12 827) excess deaths, but did decline over time (from 1·47, 95% CI 1·38–1·58 in 2004 to 1·20, 1·12–1·29 in 2010; p=0·01). Interpretation We found clinically important differences between countries in acute myocardial infarction care and outcomes. International comparisons research might help to improve health systems and prevent deaths. Funding Seventh Framework Programme for Research, National Institute for Health Research, Wellcome Trust (UK), Swedish Association of Local Authorities and Regions, Swedish Heart-Lung Foundation. PMID:24461715

Acute myocardial infarction: a comparison of short-term survival in national outcome registries in Sweden and the UK.

PubMed

Chung, Sheng-Chia; Gedeborg, Rolf; Nicholas, Owen; James, Stefan; Jeppsson, Anders; Wolfe, Charles; Heuschmann, Peter; Wallentin, Lars; Deanfield, John; Timmis, Adam; Jernberg, Tomas; Hemingway, Harry

2014-04-12

International research for acute myocardial infarction lacks comparisons of whole health systems. We assessed time trends for care and outcomes in Sweden and the UK. We used data from national registries on consecutive patients registered between 2004 and 2010 in all hospitals providing care for acute coronary syndrome in Sweden and the UK. The primary outcome was all-cause mortality 30 days after admission. We compared effectiveness of treatment by indirect casemix standardisation. This study is registered with ClinicalTrials.gov, number NCT01359033. We assessed data for 119,786 patients in Sweden and 391,077 in the UK. 30-day mortality was 7·6% (95% CI 7·4-7·7) in Sweden and 10·5% (10·4-10·6) in the UK. Mortality was higher in the UK in clinically relevant subgroups defined by troponin concentration, ST-segment elevation, age, sex, heart rate, systolic blood pressure, diabetes mellitus status, and smoking status. In Sweden, compared with the UK, there was earlier and more extensive uptake of primary percutaneous coronary intervention (59% vs 22%) and more frequent use of β blockers at discharge (89% vs 78%). After casemix standardisation the 30-day mortality ratio for UK versus Sweden was 1·37 (95% CI 1·30-1·45), which corresponds to 11,263 (95% CI 9620-12,827) excess deaths, but did decline over time (from 1·47, 95% CI 1·38-1·58 in 2004 to 1·20, 1·12-1·29 in 2010; p=0·01). We found clinically important differences between countries in acute myocardial infarction care and outcomes. International comparisons research might help to improve health systems and prevent deaths. Seventh Framework Programme for Research, National Institute for Health Research, Wellcome Trust (UK), Swedish Association of Local Authorities and Regions, Swedish Heart-Lung Foundation. Copyright © 2014 Chung et al. Open Access article distributed under the terms of CC BY-NC-ND. Published by Elsevier Ltd. All rights reserved.

Predictable And SuStainable Implementation Of National Cardiovascular Registries Infrastructure: A Think Tank Report from MDEpiNet

PubMed Central

Zeitler, Emily P.; Al-Khatib, Sana M.; Drozda, Joseph P.; Kessler, Larry G.; Kirtane, Ajay J.; Kong, David F.; Laschinger, John; Marinac-Dabic, Danica; Morice, Marie-Claude; Reed, Terrie; Sedrakyan, Art; Stein, Kenneth M.; Tcheng, James; Krucoff, Mitchell W.

2015-01-01

The Medical Device Epidemiological Network Initiative (MDEpiNet) is a public-private partnership between the US Food and Drug Administration (FDA) Center for Devices and Radiological Health (CDRH) and participating partners. The Predictable and SuStainable Implementation of National Cardiovascular Registries (PASSION) program is an MDEpiNet-sponsored program which aims to demonstrate the goals of MDEpiNet by using cardiovascular medical device registries to bridge evidence gaps across the medical device total product life cycle (TPLC). To this end, a PASSION Think Tank meeting took place in October 2014 in Silver Spring, MD, to facilitate discussion between stakeholders about the successes, challenges, and future novel applications of medical device registries, with particular emphasis on identifying pilot projects. Participants spanned a broad range of groups including patients, device manufacturers, regulators, physicians/academicians, professional societies, providers, and payers. The meeting focus included four areas of cardiovascular medicine intended to cultivate interest in four MDEpiNet Disease Specific/Device Specific Working Groups: coronary intervention, electrophysiology, valvular disease, and peripheral vascular disease. In addition, more general issues applying to registry-based infrastructure and analytical methodologies for assessing device benefit/risk were considered to provide context for the Working Groups as PASSION programs going forward. This article summarizes the discussions at the meeting and the future directions of the PASSION program. PMID:26699602

Suicide death and hospital-treated suicidal behaviour in asylum seekers in the Netherlands: a national registry-based study

PubMed Central

2011-01-01

Background Several suicide and suicidal behaviour risk factors are highly prevalent in asylum seekers, but there is little insight into the suicide death rate and the suicidal behaviour incidence in this population. The main objective of this study is to assess the burden of suicide and hospital-treated non-fatal suicidal behaviour in asylum seekers in the Netherlands and to identify factors that could guide prevention. Methods We obtained data on cases of suicide and suicidal behaviour from all asylum seeker reception centres in the Netherlands (period 2002-2007, age 15+). The suicide death rates in this population and in subgroups by sex, age and region of origin were compared with the rate in the Dutch population; the rates of hospital-treated suicidal behaviour were compared with that in the population of The Hague using indirect age group standardization. Results The study included 35 suicide deaths and 290 cases of hospital-treated suicidal behaviour. The suicide death rate and the incidence of hospital-treated suicidal behaviour differed between subgroups by sex and region of origin. For male asylum seekers, the suicide death rate was higher than that of the Dutch population (N = 32; RR = 2.0, 95%CI 1.37-2.83). No difference was found between suicide mortality in female asylum seekers and in the female general population of the Netherlands (N = 3; RR = 0.73; 95%CI 0.15-2.07). The incidence of hospital-treated suicidal behaviour was high in comparison with the population of The Hague for males and females from Europe and the Middle East/South West Asia, and low for males and females from Africa. Health professionals knew about mental health problems prior to the suicidal behaviour for 80% of the hospital-treated suicidal behaviour cases in asylum seekers. Conclusions In this study the suicide death rate was higher in male asylum seekers than in males in the reference population. The incidence of hospital-treated suicidal behaviour was higher in several

EPA Facility Registry System (FRS): NEPT

EPA Pesticide Factsheets

This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to the National Environmental Performance Track (NEPT) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

EPA Facility Registry Service (FRS): NEI

EPA Pesticide Factsheets

This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the National Emissions Inventory (NEI) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

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.

Immunization registries in the EMR Era

PubMed Central

Stevens, Lindsay A.; Palma, Jonathan P.; Pandher, Kiran K.; Longhurst, Christopher A.

2013-01-01

Background: The CDC established a national objective to create population-based tracking of immunizations through regional and statewide registries nearly 2 decades ago, and these registries have increased coverage rates and reduced duplicate immunizations. With increased adoption of commercial electronic medical records (EMR), some institutions have used unidirectional links to send immunization data to designated registries. However, access to these registries within a vendor EMR has not been previously reported. Purpose: To develop a visually integrated interface between an EMR and a statewide immunization registry at a previously non-reporting hospital, and to assess subsequent changes in provider use and satisfaction. Methods: A group of healthcare providers were surveyed before and after implementation of the new interface. The surveys addressed access of the California Immunization Registry (CAIR), and satisfaction with the availability of immunization information. Information Technology (IT) teams developed a “smart-link” within the electronic patient chart that provides a single-click interface for visual integration of data within the CAIR database. Results: Use of the tool has increased in the months since its initiation, and over 20,000 new immunizations have been exported successfully to CAIR since the hospital began sharing data with the registry. Survey data suggest that providers find this tool improves workflow and overall satisfaction with availability of immunization data. (p=0.009). Conclusions: Visual integration of external registries into a vendor EMR system is feasible and improves provider satisfaction and registry reporting. PMID:23923096

[Survey on computerized immunization registries in Italy].

PubMed

Alfonsi, V; D'Ancona, F; Ciofi degli Atti, M L

2008-01-01

Computerized immunization registries are essential for conducting and monitoring vaccination programs. In fact, they enable to improve vaccine offering to target population, generating needed-immunization lists and assessing levels of vaccination coverage. In 2007, a national survey on immunization registries was conducted in Italy. In February 2007, all the 21 Regional Health Authorities (RHAs) completed and returned an ad hoc questionnaire. In June 2007, RHAs were further contacted by telephone in order to verify and update the information provided in questionnaires. In 9 Italian Regions (42.8%), vaccination registries are computerized in all Local Health Units (LHUs). In five of these Regions, all LHUs use the same software, while in the remaining four Regions, different softwares are in use. In six additional Regions (28.6%), only some LHUs use computerized immunization registries (range 61.5%-95%). In the remaining 6 Regions (28.6%), which are all in Southern Italy, there are no computerised immunization registries at all. In total, computerised immunization registries cover 126/180 Italian LHUs (70%); in 76/126 (60%) of these LUHs, immunization registries are linked with population registries. This survey shows the need to improve the implementation of computerised immunization registries in Italy, especially in Southern Regions.

Reported Numbers of Patients with Rare Diseases Based on Ten-Year Longitudinal National Disability Registries in Taiwan

ERIC Educational Resources Information Center

Lin, Jin-Ding; Lin, Lan-Ping; Hung, Wen-Jiu

2013-01-01

This paper aims to describe a general demographic picture of patients with rare diseases in Taiwan and particularly focuses on the prevalence of rare diseases over time, age and gender distributions. We analyzed data mainly from the national disability registry from 2002 to 2011 in Taiwan, Republic of China. The results showed that the number of…

The National Violent Death Reporting System: an exciting new tool for public health surveillance.

PubMed

Steenkamp, M; Frazier, L; Lipskiy, N; Deberry, M; Thomas, S; Barker, L; Karch, D

2006-12-01

The US does not have a unified system for surveillance of violent deaths. This report describes the National Violent Death Reporting System (NVDRS), a system for collecting data on all violent deaths (homicides, suicides, accidental firearms deaths, deaths of undetermined intent, and deaths from legal intervention, excluding legal executions) in participating states. The NVDRS centralizes data from many sources, providing a more comprehensive picture of violent deaths than would otherwise be available. The NVDRS collects data on victims, suspects, and circumstances related to the violent deaths. Currently, 17 US states participate in the NVDRS; the intention is for the NVDRS to become a truly national system, representing all 50 states, the District of Columbia, and the US territories. This report describes the history of the NVDRS, provides an overview of how the NVDRS functions, and describes future directions.

Registry Assessment of Peripheral Interventional Devices (RAPID)　- Registry Assessment of Peripheral Interventional Devices Core Data Elements.

PubMed

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L; Nc, Durham; Md, Silver Spring; Japan, Tokyo; Ny, New York; Ri, Providence; Vt, Burlington; Mass, Newton; Colo, Denver; Ariz, Tempe; Calif, Santa Clara; Minn, Minneapolis; Nh, Lebanon

2018-01-25

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible.Methods and Results:Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators.

Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

PubMed

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

2018-02-01

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

Monitoring, documenting and reporting the quality of antibiotic use in the Netherlands: a pilot study to establish a national antimicrobial stewardship registry.

PubMed

Berrevoets, Marvin Ah; Ten Oever, Jaap; Sprong, Tom; van Hest, Reinier M; Groothuis, Ingeborg; van Heijl, Inger; Schouten, Jeroen A; Hulscher, Marlies E; Kullberg, Bart-Jan

2017-08-15

The Dutch Working Party on Antibiotic Policy is developing a national antimicrobial stewardship registry. This registry will report both the quality of antibiotic use in hospitals in the Netherlands and the stewardship activities employed. It is currently unclear which aspects of the quality of antibiotic use are monitored by antimicrobial stewardship teams (A-teams) and can be used as indicators for the stewardship registry. In this pilot study we aimed to determine which stewardship objectives are eligible for the envisioned registry. We performed an observational pilot study among five Dutch hospitals. We assessed which of the 14 validated stewardship objectives (11 process of care recommendations and 3 structure of care recommendations) the A-teams monitored and documented in individual patients. They provided, where possible, data to compute quality indicator (QI) performance scores in line with recently developed QIs to measure appropriate antibiotic use in hospitalized adults for the period of January 2015 through December 2015 RESULTS: All hospitals had a local antibiotic guideline describing recommended antimicrobial use. All A-teams monitored the performance of bedside consultations in Staphylococcus aureus bacteremia and the prescription of restricted antimicrobials. Documentation and reporting were the best for the use of restricted antimicrobials: 80% of the A-teams could report data. Lack of time and the absence of an electronic medical record system enabling documentation during the daily work flow were the main barriers hindering documentation and reporting. Five out of 11 stewardship objectives were actively monitored by A-teams. Without extra effort, 4 A-teams could report on the quality of use of restricted antibiotics. Therefore, this aspect of antibiotic use should be the starting point of the national antimicrobial stewardship registry. Our registry is expected to become a powerful tool to evaluate progress and impact of antimicrobial

The Cystic Fibrosis Foundation Patient Registry. Design and Methods of a National Observational Disease Registry.

PubMed

Knapp, Emily A; Fink, Aliza K; Goss, Christopher H; Sewall, Ase; Ostrenga, Josh; Dowd, Christopher; Elbert, Alexander; Petren, Kristofer M; Marshall, Bruce C

2016-07-01

The Cystic Fibrosis Foundation Patient Registry (CFFPR) is an ongoing patient registry study that collects longitudinal demographic, clinical, and treatment information about persons with cystic fibrosis (CF) in the United States. CF is a life-shortening genetic disorder that occurs in approximately 1 in 3,500 births in the United States. High-quality observational data is important for clinical research, quality improvement, and clinical management. To describe the data collection, patient population, and key limitations of the CFFPR. Inclusion criteria for the CFFPR include diagnosis with CF or a CFTR-associated disorder, care at an accredited care center program, and provision of informed consent. Data from clinic visits and hospitalizations are collected through a secure website. Loss to follow-up and generalizability were examined using several methods. The accuracy of CFFPR data was evaluated with an audit of 2012 CFFPR data compared to the medical record. Since 1986, the CFFPR contains the records of 48,463 individuals with CF. Participation among individuals seen at accredited care centers is high, and loss to follow-up is low. An audit of 2012 CFFPR data suggests that the CFFPR contains 95% of clinic visits and 90% of hospitalizations found in the medical record for these patients, and nearly all of the audited fields were highly accurate. Registries such as the CFFPR are important tools for research, clinical care, and tracking incidence, mortality and population trends.

Probability of Finding Marrow Unrelated Donor (MUD) for an Indian patient in a Multi-national Human Leukocyte Antigen (HLA) Registry.

PubMed

Tiwari, Aseem K; Bhati-Kushwaha, Himakshi; Kukreja, Pooja; Mishra, Vikash C; Tyagi, Neetu; Sharma, Ashish; Raina, Vimarsh

2015-06-01

With an increase in the number of transplants happening globally, hematopoietic stem cells (HSC) transplantation from matched unrelated donor (MUD) has begun. The increasing trend of MUD transplants across countries has been largely facilitated with the conspicuous growth of volunteer HSC donor noted in the last decade i.e. 8 million HSC donors in 2002 to more than 22 million in 2013 registered in 71 member registries of the Bone Marrow Donor Worldwide (BMDW). Some populations of the world are still very poorly represented in these registries. Since, the chances of successful engraftment and disease free survival are directly proportional to the HLA compatibility between the recipient and the prospective donor, the diversity of the HLA system at the antigenic and allelic level and the heterogeneity of HLA data of the registered donors has a bearing on the probability of finding a volunteer unrelated HSC donor for patients from such populations. In the present study 126 patients were identified suffering from hematological diseases requiring MUD transplant. Their HLA typing was performed and search was done using BMDW database. The search results for these Indian patients in the multinational registry as well as in the Indian Registries were analyzed using mean, range, standard deviation and finally evaluated in terms of probability for finding matched donor (MUD). Total Asian population is only 11 % in the BMDW making it difficult to find a MUD for an Asian patient. The current study supports this, experimentally; revealing that the probability of finding an allele match for an Indian patient in the multinational Human Leukocyte Antigen (HLA) registries is 16 % and a dismal 0.008 % in the Indian registries (donors in Indian registries is just 33,678 as compared to 22.5 million in BMDW). This greatly, emphasizes on enhancing the number of Indian donors in Indian and multi-national registries.

National Hematopoietic Stem Cells Transplant Registry in Poland: Nationwide Internet Reporting System and Results.

PubMed

Łęczycka, A; Dudkiewicz, M; Czerwiński, J; Malanowski, P; Żalikowska-Hołoweńko, J; Danielewicz, R

2016-06-01

History of hematopoietic stem cell transplantations in Poland begins in early 1980s; the 1st bone marrow allotransplantation was performed in 1983 in the Central Clinical Hospital of the Military Medical Academy in Warsaw. Following years brought the 1st autologous stem cell transplantations. Ten years later, unrelated bone marrow transplantation was performed for the 1st time by the team of the Hematology and Blood and Marrow Transplantation Unit in Katowice. Since then, hematopoietic stem cell transplantation developed to be standard procedure and one of the most important therapies applied in leukemia treatment. The number of allotransplantations in Poland has grown significantly in the past 2 decades, which generated new needs and problems. In 2005, based on a new Transplant Law, a National Transplants Registry was created. Its main role is to collect data (registration of procedures and follow-up data) related to every transplantation case for stem cells and tissues as well as for organs. We present statistics concerning stem cell transplantations performed in Poland, as collected in the National Transplants Registry in the years 2006-2014. There are 18 centers transplanting hematopoietic stem cells in Poland. The total number of hematopoietic stem cell transplantations performed in 2006-2014 was 3,537, with allotransplantations from relatives accounted for 1,491 and from unrelated donors for 2,046. The main indication for allotransplantation in past years was acute leukemia. Copyright © 2016 Elsevier Inc. All rights reserved.

Big Data in Organ Transplantation: Registries and Administrative Claims

PubMed Central

Massie, Allan B.; Kucirka, Lauren; Segev, Dorry L.

2015-01-01

The field of organ transplantation benefits from large, comprehensive, transplant-specific national datasets available to researchers. In addition to the widely-used OPTN-based registries (the UNOS and SRTR datasets) and USRDS datasets, there are other publicly available national datasets, not specific to transplantation, which have historically been underutilized in the field of transplantation. Of particular interest are the Nationwide Inpatient Sample (NIS) and State Inpatient Databases (SID), produced by the Agency for Healthcare Research and Quality (AHRQ). The United States Renal Data System (USRDS) database provides extensive data relevant to studies of kidney transplantation. Linkage of publicly available datasets to external data sources such as private claims or pharmacy data provides further resources for registry-based research. Although these resources can transcend some limitations of OPTN-based registry data, they come with their own limitations, which must be understood to avoid biased inference. This review discusses different registry-based data sources available in the United States, as well as the proper design and conduct of registry-based research. PMID:25040084

[Novel Scale for Long-Term Prognostication of Risk of Death and Nonfatal Cardiovascular Complications in Patients From the PROGNOSIS-IHD Registry].

PubMed

Tolpygina, S N; Martsevich, S Yu; Gofman, E A; Deev, A D

2016-06-01

To elaborate a risk score for prognostication of long-term survival of patients with chronic ischemic heart disease (CIHD) using data of the PROGNOSIS-IHD Registry. Participants of the PROGNOSIS-IHD Registry (n=641, 500 men, 141 women) were inhabitants of Moscow region consecutively admitted for planned hospitalization with diagnosis of IHD to the clinic of the Center of Preventive Medicine from 01.01.2004 to 31.12.2007. During hospitalization all patients underwent coronary angiography. Diagnosis of IHD was not confirmed in 100 of 641 patients. In 2010 vital status was determined in 551 patients (86%). Mean duration of observation was 3.9 years. Uni- and multi-factorial analysis was used for assessment of prognostic value of clinical-anamnestic and instrumental parameters. The following parameters which were included into the risk score were most significant for prediction of occurrence of a primary end point (fatal and nonfatal cardiovascular complications [CVC]): feeling of shortness of breath (relative risk [RR] 1.86 and 1 point in risk score); history of unstable IHD course (acute coronary syndrome, myocardial infarction, unstable angina) (RR 1.76 and 1 point); need in diuretics before hospitalization (RR 1.92 and 1 point); stenosis of a cardiac valve (RR 2.95 and 2 points); zones of abnormal contractility of left ventricular myocardium at echocardiography (RR 2 and 1 point). Risk of death and nonfatal CVC in patients with suspected IHD was considered very low, low, medium, and high at score values 0, 1 (RR 1.6), 2 (RR 2.4), and more or equal 3 (RR 6.1), respectively. Novel scale has high prognostic significance relative to stratification of risk of death and nonfatal CVC in patients with suspected CIHD and can be used in wide clinical practice because of its informativeness, simplicity, and accessibility.

UK Renal Registry 15th annual report: Chapter 5 survival and causes of death of UK adult patients on renal replacement therapy in 2011: national and centre-specific analyses.

PubMed

Steenkamp, Retha; Shaw, Catriona; Feest, Terry

2013-01-01

These analyses examine a) survival from the start of renal replacement therapy (RRT) based on the total incident UK RRT population reported to the UK Renal Registry, b) survival of prevalent patients. Changes in survival between 1997 and 2011 are also reported. Survival was calculated for both incident and prevalent patients on RRT and compared between the UK countries after adjustment for age. Survival of incident patients (starting RRT during 2010) was calculated both from the start of RRT and from 90 days after starting RRT, both with and without censoring at transplantation. Prevalent dialysis patients were censored at transplantation; this means that the patient is considered alive up to the point of transplantation, but the patient's status post-transplant is not considered. Both Kaplan-Meier and Cox adjusted models were used to calculate survival. Causes of death were analysed for both groups. The relative risk of death was calculated compared with the general UK population. The unadjusted 1 year after 90 day survival for patients starting RRT in 2010 was 87.3%, representing an increase from the previous year (86.6%). In incident patients aged 18-64 years, the unadjusted 1 year survival had risen from 86.0% in patients starting RRT in 1997 to 92.6% in patients starting RRT in 2010 and for those aged ≥65 it had increased from 63.9% to 77.0% over the same period. The age-adjusted one year survival (adjusted to age 60) of prevalent dialysis patients increased from 88.1% in the 2001 cohort to 89.8% in the 2010 cohort. Prevalent diabetic patient one year survival rose from 82.1% in the 2002 cohort to 84.7% in the 2010 cohort. The age-standardised mortality ratio for prevalent RRT patients compared with the general population was 18 for age group 30-34 and 2.5 at age 85+ years. In the prevalent RRT dialysis population, cardiovascular disease accounted for 22% of deaths, infection and treatment withdrawal 18% each and 25% were recorded as other causes of death

Breast cancer trends differ by ethnicity: a report from the South African National Cancer Registry (1994-2009).

PubMed

Singh, E; Joffe, M; Cubasch, H; Ruff, P; Norris, S A; Pisa, P T

2017-02-01

To describe breast cancer (BC) incidence and mortality by ethnicity in South Africa (SA). Sources of data included the South African National Cancer Registry (NCR) pathology-based reports (1994–2009) and Statistics South Africa (SSA) mortality data (1997–2009). Numbers of cases, age-standardised incidence rates (ASIR) and lifetime risk (LR) were extracted from the NCR database for 1994–2009. Age-specific incidence rates were calculated for five-year age categories. The direct method of standardisation was employed to calculate age-standardised mortality rates (ASMR) using mortality data. Between 1994 and 2009, there were 85 561 female BC. For the Black, Coloured and Asian groups, increases in ASIR and LR were observed between 1994 and 2009. In 2009, the ASIR for the total population, Blacks, Whites, Coloureds and Asians were 26.9, 18.7, 50.2, 40.9 and 51.2 per 100 000, respectively. For Asians, an increase in proportion of BC as a percentage of all female cancers was observed between 1994 and 2002 (11.1%) and continued to increase to 2009 (a further 4.5%). Whites and Asians presented higher incidences of BC at earlier ages compared with Blacks and Coloureds in 2009. In 1998, there were 1618 BC deaths in SA compared with 2784 deaths in 2009. ASMR between 1997 and 2004 increased but stabilised thereafter. This paper demonstrated that SA BC incidence rates are similar to other countries in the region, but lower than other countries with similar health systems. Ethnic differences in BC trends were observed. However, the reasons for observed ethnic differences are unclear. © The Author 2016. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.

The Polish National Registry for Fetal Cardiac Pathology: organization, diagnoses, management, educational aspects and telemedicine endeavors.

PubMed

Slodki, Maciej; Szymkiewicz-Dangel, Joanna; Tobota, Zdzislaw; Seligman, Neil S; Weiner, Stuart; Respondek-Liberska, Maria

2012-05-01

We describe the National Registry for Fetal Cardiac Pathology, a program under the Polish Ministry of Health aimed at improving the prenatal diagnosis, care, and management of congenital heart disease (CHD). An online database was created to prospectively record diagnosis, prenatal care, delivery, follow-up, and still images and video for fetuses with CHD. A certification program in fetal cardiac ultrasound was also implemented. Optimal screening and referral centers were identified by number of fetuses entered in the Registry yearly by each center. From 2004 to 2009, 2910 fetuses with CHD were registered (2473 structural, 437 functional anomalies). The most common reasons for referral for fetal echocardiography were abnormal four-chamber view (56.0%) and extra-cardiac anomalies (8.2% ), while the most common diagnoses were atrioventricular septal defects (10.2%) and hypoplastic left heart syndrome (9.7%). Prenatal diagnosis increased yearly, from 10.0% of neonatal diagnoses in 2003 to 38.0% in 2008. From inception of the registry up to 2009 there has been a fourfold increase in the number of neonates referred for cardiac surgery in whom the condition was prenatally diagnosed. Equally important achievements include the establishment of a certification program for fetal echocardiography and the organization of prenatal and neonatal management. © 2012 John Wiley & Sons, Ltd.

Temporal Trends in the Risk Profile of Patients Undergoing Outpatient Percutaneous Coronary Intervention: A Report from the National Cardiovascular Data Registry's CathPCI Registry.

PubMed

Vora, Amit N; Dai, Dadi; Gurm, Hitinder; Amin, Amit P; Messenger, John C; Mahmud, Ehtisham; Mauri, Laura; Wang, Tracy Y; Roe, Matthew T; Curtis, Jeptha; Patel, Manesh R; Dauerman, Harold L; Peterson, Eric D; Rao, Sunil V

2016-03-01

Because of recent changes in criteria for coverage for inpatient hospital stays, most nonacute percutaneous coronary intervention (PCI) procedures are reimbursed on an outpatient basis regardless of underlying patient risk. Downstream effects of these changes on the risk profile of patients undergoing outpatient PCI have not been evaluated. Using the American College of Cardiology National Cardiovascular Data Registry's CathPCI Registry, we assessed temporal trends in risk profiles and rates of hospital admission among 999 279 patients undergoing PCI qualifying for outpatient reimbursement. We estimated mortality and bleeding risk using validated models from the registry. From 2009 to 2014, the proportion of outpatients not admitted to a hospital after PCI increased from 32.8% to 66.3% (P<0.001). Patients who were admitted after PCI were older, had greater comorbidities, and experienced more post-PCI complications (all P<0.001). Among those not admitted, the proportion of patients at high risk for predicted mortality increased significantly from 17.0% to 19.8% during the study period (P<0.001). In contrast, 16.7% of patients admitted after PCI were at low risk for mortality. Among patients undergoing PCI procedures that qualify for outpatient reimbursement, there has been a temporal decrease in postprocedure hospital admission. Concomitantly, the proportion of these outpatients at high risk for mortality has significantly increased over time. These data suggest that current reimbursement classification could be improved by incorporating patient risk to appropriately match the necessary resources to the needed level of care. © 2016 American Heart Association, Inc.

Using National Inpatient Death Rates as a Benchmark to Identify Hospitals with Inaccurate Cause of Death Reporting - Missouri, 2009-2012.

PubMed

Lloyd, Jennifer; Jahanpour, Ehsan; Angell, Brian; Ward, Craig; Hunter, Andy; Baysinger, Cherri; Turabelidze, George

2017-01-13

Reporting causes of death accurately is essential to public health and hospital-based programs; however, some U.S. studies have identified substantial inaccuracies in cause of death reporting. Using CDC's national inpatient hospital death rates as a benchmark, the Missouri Department of Health and Senior Services (DHSS) analyzed inpatient death rates reported by hospitals with high inpatient death rates in St. Louis and Kansas City metro areas. Among the selected hospitals with high inpatient death rates, 45.8% of death certificates indicated an underlying cause of death that was inconsistent with CDC's Guidelines for Death Certificate completion. Selected hospitals with high inpatient death rates were more likely to overreport heart disease and renal disease, and underreport cancer as an underlying cause of death. Based on these findings, the Missouri DHSS initiated a new web-based training module for death certificate completion based on the CDC guidelines in an effort to improve accuracy in cause of death reporting.

Brief Report: Association Between Pregnancy Outcomes and Death From Cardiovascular Causes in Parous Women With Systemic Lupus Erythematosus: A Study Using Swedish Population Registries.

PubMed

Soh, May Ching; Nelson-Piercy, Catherine; Dib, Fadia; Westgren, Magnus; McCowan, Lesley; Pasupathy, Dharmintra

2015-09-01

To determine if maternal placental syndromes (MPS) are associated with an increased risk of death from cardiovascular causes in women with systemic lupus erythematosus (SLE). Between 1973 and 2011, women with SLE and a history of pregnancy were identified using linked Swedish population registries. The outcome was death from primarily cardiovascular causes, defined as death from acute coronary syndrome or coronary artery disease, stroke, or peripheral vascular disease. The exposure was MPS, defined as any hypertensive disorders in pregnancy, stillbirth, placental abruption, or delivery of a small-for-gestational-age infant. The association of preterm delivery (delivery at <34 weeks of gestation) with death from cardiovascular causes was also explored. Risk of death from cardiovascular causes was determined using logistic regression, adjusting for the year of first delivery, duration of SLE, number of inpatient admissions, and cardiovascular risk factors. A total of 3,977 women with SLE had 7,410 pregnancies during the study interval. Death from primarily cardiovascular causes occurred in 44 of the 325 women who died (13.5%). The median age at death from cardiovascular causes was 54 years (interquartile range 48-58 years), and these women were more likely to have had hypertension and renal disease. MPS was associated with an increased risk of death from primarily cardiovascular causes (adjusted odds ratio [OR] 2.19 [95% confidence interval (95% CI) 1.14-4.22]), specifically, a history of placental abruption (adjusted OR 5.78 [95% CI 1.61-20.72]). Delivery at <34 weeks of gestation, particularly when combined with MPS, was also associated with an increased risk of death from primarily cardiovascular causes (adjusted OR 2.49 [95% CI 1.06-5.85]). MPS in pregnancy is associated with a higher risk of death from primarily cardiovascular causes in women with SLE. © 2015, American College of Rheumatology.

The cost of cancer registry operations: Impact of volume on cost per case for core and enhanced registry activities

PubMed Central

Subramanian, Sujha; Tangka, Florence K.L.; Beebe, Maggie Cole; Trebino, Diana; Weir, Hannah K.; Babcock, Frances

2016-01-01

Background Cancer registration data is vital for creating evidence-based policies and interventions. Quantifying the resources needed for cancer registration activities and identifying potential efficiencies are critically important to ensure sustainability of cancer registry operations. Methods Using a previously validated web-based cost assessment tool, we collected activity-based cost data and report findings using 3 years of data from 40 National Program of Cancer Registry grantees. We stratified registries by volume: low-volume included fewer than 10,000 cases, medium-volume included 10,000–50,000 cases, and high-volume included >50,000 cases. Results Low-volume cancer registries incurred an average of $93.11 to report a case (without in-kind contributions) compared with $27.70 incurred by high-volume registries. Across all registries, the highest cost per case was incurred for data collection and abstraction ($8.33), management ($6.86), and administration ($4.99). Low- and medium-volume registries have higher costs than high-volume registries for all key activities. Conclusions Some cost differences by volume can be explained by the large fixed costs required for administering and performing registration activities, but other reasons may include the quality of the data initially submitted to the registries from reporting sources such as hospitals and pathology laboratories. Automation or efficiency improvements in data collection can potentially reduce overall costs. PMID:26702880

United Kingdom Carotid Artery Stent Registry: Short- and Long-Term Outcomes

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

Goode, S. D., E-mail: s.goode@sheffield.ac.uk; Cleveland, T. J.; Gaines, P. A.

Background: Carotid artery stenting (CAS) has evolved to treat carotid artery disease with the intention of prevent stroke. The British Society of Interventional Radiologists developed a voluntary registry to monitor the practice of this novel procedure. We present the data from the United Kingdom (UK) CAS registry for short and long-term outcomes for symptomatic and asymptomatic carotid disease. Methods: The UK CAS registry collected data from 1998 to 2010 from 31 hospitals across the UK for 1,154 patients. All interventions were enrolled in the registry for both asymptomatic and symptomatic patients. Initial entry forms were completed for each patient enteredmore » with data including indications, demographic data, CAS data (including stents and protection device details) and 30-day outcomes. Complications were documented. Follow-up data were collected at yearly intervals. Results: Nine hundred fifty-three (83 %) symptomatic and 201 (17 %) asymptomatic patients were enrolled into the registry. The 30-day all stroke and death rates for symptomatic patients were 5.5 and 2.2 % for those with asymptomatic disease. The 30-day mortality rate was 1.7 % for symptomatic and 0.6 % for asymptomatic patients. For symptomatic patients undergoing CAS, the 7-year all-cause mortality rate was 22.2 % and for asymptomatic patients 18.1 %. The 7-year all-cause mortality and disabling stroke rates were 25.3 and 19.4 %, respectively. Conclusion: These data indicate that outside of the tight constraints of a randomised trial, CAS provides effective prophylaxis against stroke and death.« less

Voluntary Health Registry of French Nationals after the Great East Japan Earthquake, Tsunami, and Fukushima Daiichi Nuclear Power Plant Accident: Methods, Results, Implications, and Feedback.

PubMed

Motreff, Yvon; Pirard, Philippe; Lagrée, Céline; Roudier, Candice; Empereur-Bissonnet, Pascal

2016-06-01

Introduction The 11th of March 2011, a magnitude 9.0 earthquake struck alongside the north-east coast of Honshu Island, Japan, causing a tsunami and a major nuclear accident. The French Institute for Public Health Surveillance (InVS) set up, within one week after the triple catastrophe, an Internet-based registry for French nationals who were in Japan at the time of the disasters. In this string of disasters, in this context of uncertainties about the nuclear risks, the aim of this registry was to facilitate the: (1) realization of further epidemiologic studies, if needed; and (2) contact of people if a medical follow-up was needed. The purpose of this report was to describe how the health registry was set up, what it was used for, and to discuss further utilization and improvements to health registries after disasters. The conception of the questionnaire to register French nationals was based on a form developed as part of the Steering Committee for the management of the post-accident phase in the event of nuclear accident or a radiological emergency situation (CODIRPA) work. The questionnaire was available online. The main objective was achieved since it was theoretically possible to contact again the 1,089 persons who completed the form. According to the data collected on their space-time budget, to the result of internal contamination measured by the French Institute for Radiological Protection and Nuclear Safety (IRSN) and dosimetric expertise published by the World Health Organization (WHO), it was not suitable to conduct an epidemiologic follow-up of adverse effects of exposure to ionizing radiations among them. However, this registry was used to launch a qualitative study on exposure to stress and psychosocial impact of the Great East Japan Earthquake on French nationals who were in Japan in March 2011. Setting a registry after a disaster is a very important step in managing the various consequences of a disaster. This experience showed that it is quickly

Surveillance for Violent Deaths - National Violent Death Reporting System, 17 States, 2013.

PubMed

Lyons, Bridget H; Fowler, Katherine A; Jack, Shane P D; Betz, Carter J; Blair, Janet M

2016-08-19

In 2013, more than 57,000 persons died in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 17 U.S. states for 2013. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2013. NVDRS collects data from participating states regarding violent deaths obtained from death certificates, coroner/medical examiner reports, law enforcement reports, and secondary sources (e.g., child fatality review team data, supplemental homicide reports, hospital data, and crime laboratory data). This report includes data from 17 states that collected statewide data for 2013 (Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, North Carolina, New Jersey, New Mexico, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin). NVDRS collates documents for each death and links deaths that are related (e.g., multiple homicides, a homicide followed by a suicide, or multiple suicides) from a single incident. For 2013, a total of 18,765 fatal incidents involving 19,251 deaths were captured by NVDRS in the 17 states included in this report. The majority (66.2%) of deaths were suicides, followed by homicides (23.2%), deaths of undetermined intent (8.8%), deaths involving legal intervention (1.2%) (i.e., deaths caused by law enforcement and other persons with legal authority to use deadly force, excluding legal executions), and unintentional firearm deaths (<1%). (The term legal intervention is a classification incorporated into the International Classification of Diseases, Tenth Revision [ICD-10] and does not denote the lawfulness or legality of the circumstances surrounding a death caused by law enforcement.) Suicides occurred at higher rates among males, non-Hispanic whites, American Indian/Alaska Natives, persons aged 45

Causes of adult female deaths in Bangladesh: findings from two National Surveys.

PubMed

Nahar, Quamrun; El Arifeen, Shams; Jamil, Kanta; Streatfield, Peter Kim

2015-09-18

Assessment of causes of death and changes in pattern of causes of death over time are needed for programmatic purposes. Limited national level data exist on the adult female causes of death in Bangladesh. Using data from two nationally representation surveys, the 2001 and 2010 Bangladesh Maternal Mortality Surveys (BMMS), the paper examines the causes of adult female death, aged 15-49 years, and changes in the patterns of these deaths. In both surveys, all household deaths three years prior to the survey were identified. Adult female deaths were then followed by a verbal autopsy (VA) using the WHO structured questionnaire. Two physicians independently reviewed the VA forms to assign a cause of death using the ICD-10; in case of disagreement, a third physician made an independent review and assigned a cause of death. The overall mortality rates for women aged 15-49 in 2001 and 2010 were 182 per 100,000 and 120 per 100,000 respectively. There is a shift in the pattern of causes of death during the period covered by the two surveys. In the 2001 survey, the main causes of death were maternal (20 %), followed by diseases of the circulatory system (15 %), malignancy (14 %) and infectious diseases (13 %). However, in the 2010 survey, malignancies were the leading cause (21 %), followed by diseases of the circulatory system (16 %), maternal causes (14 %) and infectious diseases (8 %). While maternal deaths remained the number one cause of death among 20-34 years old in both surveys, unnatural deaths were the main cause for teenage deaths, and malignancies were the main cause of death for older women. Although there is an increasing trend in the proportion of women who died in hospitals, in both surveys most women died at home (74 % in 2001 and 62 % in 2010). The shift in the pattern of causes of adult female deaths is in agreement with the overall change in the disease pattern from communicable to non-communicable diseases in Bangladesh. Suicide and other violent deaths as

Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination

PubMed Central

Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E

2016-01-01

The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones

Local politico-administrative perspectives on quality improvement based on national registry data in Sweden: a qualitative study using the Consolidated Framework for Implementation Research.

PubMed

Fredriksson, Mio; Eldh, Ann Catrine; Vengberg, Sofie; Dahlström, Tobias; Halford, Christina; Wallin, Lars; Winblad, Ulrika

2014-12-28

Through a national policy agreement, over 167 million Euros will be invested in the Swedish National Quality Registries (NQRs) between 2012 and 2016. One of the policy agreement's intentions is to increase the use of NQR data for quality improvement (QI). However, the evidence is fragmented as to how the use of medical registries and the like lead to quality improvement, and little is known about non-clinical use. The aim was therefore to investigate the perspectives of Swedish politicians and administrators on quality improvement based on national registry data. Politicians and administrators from four county councils were interviewed. A qualitative content analysis guided by the Consolidated Framework for Implementation Research (CFIR) was performed. The politicians' and administrators' perspectives on the use of NQR data for quality improvement were mainly assigned to three of the five CFIR domains. In the domain of intervention characteristics, data reliability and access in reasonable time were not considered entirely satisfactory, making it difficult for the politico-administrative leaderships to initiate, monitor, and support timely QI efforts. Still, politicians and administrators trusted the idea of using the NQRs as a base for quality improvement. In the domain of inner setting, the organizational structures were not sufficiently developed to utilize the advantages of the NQRs, and readiness for implementation appeared to be inadequate for two reasons. Firstly, the resources for data analysis and quality improvement were not considered sufficient at politico-administrative or clinical level. Secondly, deficiencies in leadership engagement at multiple levels were described and there was a lack of consensus on the politicians' role and level of involvement. Regarding the domain of outer setting, there was a lack of communication and cooperation between the county councils and the national NQR organizations. The Swedish experiences show that a government

The Danish Schizophrenia Registry.

PubMed

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data.

Australian Twin Registry: a nationally funded resource for medical and scientific research, incorporating match and WATCH.

PubMed

Hopper, John L; Treloar, Susan A; de Klerk, Nicholas H; Morley, Ruth

2006-12-01

The Australian Twin Registry (ATR) has, since the late 1970s, enrolled more than 30,000 pairs of all zygosity types and ages willing to consider participation in approved research studies. Its core functions are the recruitment to, and maintenance of, an up-to-date database containing contact details and baseline information, and the management of fair and equitable access so as to enhance medical and scientific research. The ATR has facilitated more than 430 studies producing 525 peer-reviewed publications using a variety of designs including classic biometrical twin and twin family studies, co-twin control studies, intervention studies, longitudinal studies, and studies of issues relevant specifically to twins. The ATR is supported for 2004 to 2009 by an Australian National Health and Medical Research Council (NHMRC) Enabling Grant, a new form of funding which recognizes the importance of long-term support for shared national resources. New initiatives include: integration with the Western Australian Twin Child Health (WATCH) cohort and the new Western Australian Twin Registry (WATR); foundation of a cohort of mothers and their twin children recruited from the time of diagnosis of the multiple gestation (match); a national Twins Festival run in collaboration with the Australian Multiple Birth Association (AMBA); promotion of the ATR at medical conferences; and fostering an active network of researchers from a range of disciplines and providing financial support for new researchers to attend international twin research workshops. Consistent with its mission statement, the long-term goal of the ATR is to make twin studies a standard component of medical and scientific research.

Testosterone treatment is not associated with increased risk of adverse cardiovascular events: results from the Registry of Hypogonadism in Men (RHYME).

PubMed

Maggi, Mario; Wu, Frederick C W; Jones, Thomas H; Jackson, Graham; Behre, Hermann M; Hackett, Geoffrey; Martin-Morales, Antonio; Balercia, Giancarlo; Dobs, Adrian S; Arver, Stefan T E; Maggio, Marcello; Cunningham, Glenn R; Isidori, Andrea M; Quinton, Richard; Wheaton, Olivia A; Siami, Flora S; Rosen, Raymond C

2016-10-01

The aim of this study was to assess cardiovascular (CV) safety of testosterone replacement therapy (TRT) in a large, diverse cohort of European men with hypogonadism (HG). The Registry of Hypogonadism in Men (RHYME) was designed as a multi-national, longitudinal disease registry of men diagnosed with hypogonadism (HG) at 25 clinical sites in six European countries. Data collection included a complete medical history, physical examination, blood sampling and patient questionnaires at multiple study visits over 2-3 years. Independent adjudication was performed on all mortalities and CV outcomes. Of 999 patients enrolled with clinically diagnosed HG, 750 (75%) initiated some form of TRT. Registry participants, including both treated and untreated patients, contributed 23 900 person-months (99.6% of the targeted) follow-up time. A total of 55 reported CV events occurred in 41 patients. Overall, five patients died of CV-related causes (3 on TRT, 2 untreated) and none of the deaths were adjudicated as treatment-related. The overall CV incidence rate was 1522 per 100 000 person-years. CV event rates for men receiving TRT were not statistically different from untreated men (P=.70). Regardless of treatment assignment, CV event rates were higher in older men and in those with increased CV risk factors or a prior history of CV events. Age and prior CV history, not TRT use, were predictors of new-onset CV events in this multi-national, prospective hypogonadism registry. © 2016 John Wiley & Sons Ltd.

Sudden cardiac death in the young

PubMed Central

Ackerman, Michael; Atkins, Dianne L; Triedman, John K

2016-01-01

Although the occurrence of sudden cardiac death (SCD) in a young person is a rare event, it is traumatic and often widely publicized. In recent years, SCD in this population has been increasingly seen as a public health and safety issue. This review presents current knowledge relevant to the epidemiology of SCD and to strategies for prevention, resuscitation and identification of those at greatest risk. Areas of active research and controversy include the development of best practices in screening, risk stratification approaches and post-mortem evaluation, and identification of modifiable barriers to providing better outcomes after resuscitation of young SCD victims. Institution of a national registry of SCD in the young will provide data that will help to answer these questions. PMID:26951821

Nursing Home Use After Implantable Cardioverter-Defibrillator Implantation in Older Adults: Results from the National Cardiovascular Data Registry.

PubMed

Kramer, Daniel B; Reynolds, Matthew R; Normand, Sharon-Lise; Parzynski, Craig S; Spertus, John A; Mor, Vincent; Mitchell, Susan L

2017-02-01

To evaluate the incidence and characteristics of nursing home (NH) use after implantable cardioverter-defibrillator (ICD) implantation. Cohort study. Medicare beneficiaries in the National Cardiovascular Data Registry-ICD Registry. Individuals aged 65 and older receiving ICDs between January 1, 2006, and March 31, 2010 (N = 192,483). Proportion of ICD recipients discharged to NHs directly after device placement, cumulative incidence of long-term NH admission, and factors associated with immediate discharge to a NH and time to long-term NH admission. Over 4 years, 40.6% of the cohort died, and 35,939 (18.7%) experienced at least one NH admission, including 4.0% directly discharged to a NH after ICD implantation and 2.8% admitted to long-term NH care during follow-up. The cumulative incidence of long-term NH admission, accounting for the competing risk of death, was 1.7% at 1 year, 3.8% at 3 years, and 4.6% at 4 years; 20.1% of individuals admitted to a NH died there. Factors most strongly associated with direct NH discharge and time to long-term NH care were older age (adjusted odds ratio (AOR) = 2.09, 95% confidence interval (CI) = 2.01-2.17 per 10-year increment; adjusted hazard ratio (AHR) = 1.88, 95% CI = 1.80-1.97, respectively), dementia (AOR = 2.60, 95% CI = 2.25-3.01; AHR = 2.50, 95% CI = 2.14-2.93, respectively), and Medicare Part A claim for NH stay in prior 6 months (AOR = 3.96, 95% CI = 3.70-4.25; AHR = 2.88, 95% CI = 2.65-3.14, respectively). Nearly one in five individuals are admitted to NHs over a median of 1.6 years of follow-up after ICD implantation. Understanding these outcomes may help inform the clinical care of these individuals. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

[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.

TREatment of ATopic eczema (TREAT) Registry Taskforce: An international Delphi exercise to identify a core set of domains and domain items for national atopic eczema photo- and systemic therapy registries.

PubMed

Gerbens, L A A; Apfelbacher, C J; Irvine, A D; Barbarot, S; de Booij, R J; Boyce, A E; Deleuran, M; Eichenfield, L F; Hof, M H; Middelkamp-Hup, M A; Roberts, A; Schmitt, J; Vestergaard, C; Wall, D; Weidinger, S; Williamson, P R; Flohr, C; Spuls, P I

2018-05-15

Evidence of immunomodulatory therapies to guide clinical management for atopic eczema (AE) is scarce, despite frequent and often off-label use. Patient registries provide valuable evidence for the effects of treatments under real world conditions which can inform treatment guidelines, give the opportunity for health economic evaluation and the evaluation of quality of care, as well as pharmacogenetic and -dynamic research which cannot be adequately addressed in clinical trials. The TREatment of ATopic eczema (TREAT) Registry Taskforce aims to seek international consensus on a core set of domains and items ('what to measure') for AE research registries, using a Delphi approach. Participants from six stakeholder groups were included: doctors, nurses, non-clinical researchers, patients, industry and regulatory body representatives. The eDelphi comprised 3 sequential online rounds, requesting participants to rate the importance of each proposed domain item. Participants could add domain items to the proposed list in round 1. A final consensus meeting was held to ratify the core set. 479 participants from 36 countries accessed the eDelphi platform, of whom 86%, 79% and 74% completed rounds 1, 2, and 3 respectively. At the face-to-face consensus meeting attended by 42 participants the final core set was established containing 19 domains with 69 domain items (49 baseline and 20 follow-up items). This core set of domains and items to be captured by national AE systemic therapy registries will standardise data collection and thereby allow direct comparability across registries and facilitate data pooling between countries. Ultimately, it will provide greater insight into the effectiveness, safety and cost-effectiveness of photo- and systemic immunomodulatory therapies. This article is protected by copyright. All rights reserved. This article is protected by copyright. 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.

Dietary habits and weight maintenance success in high versus low exercisers in the National Weight Control Registry

PubMed Central

Ogden, Lorraine G.; Phelan, Suzanne; Thomas, J. Graham; Hill, James O; Wing, Rena R.; Wyatt, Holly R.

2015-01-01

Background The National Weight Control Registry (NWCR) was established to examine characteristics of successful weight loss maintainers. This study compares the diet and behavioral characteristics and weight regain trajectories of NWCR members with differing physical activity (PA) levels at baseline. Methods Participants (n=3591) were divided into 4 levels of self-reported PA at registry entry (<1000, 1000 to <2250, 2250 to <3500, and ≥3500 kcals/week). We compared self-reported energy intake (EI), macronutrient composition, eating behaviors (dietary restraint, hunger, and disinhibition), weight loss maintenance strategies, and 3 year weight regain between these 4 activity groups. Results Those with the highest PA at registry entry had lost the most weight, and reported lower fat intake, more dietary restraint, and greater reliance on several specific dietary strategies to maintain weight loss. Those in the lowest PA category maintained weight loss despite low levels of PA and without greater reliance on dietary strategies. There were no differences in odds of weight regain at year 3 between PA groups. Conclusions These findings suggest that there is not a “one size fits all strategy” for successful weight loss maintenance and that weight loss maintenance may require the use of more strategies by some individuals than others. PMID:24385447

Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

PubMed

Kuwatsuka, Yachiyo

2016-01-01

Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed.

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.

Iliac Arteries: How Registries Can Help Improve Outcomes

PubMed Central

Tapping, Charles Ross; Uberoi, Raman

2014-01-01

There are many publications reporting excellent short and long-term results with endovascular techniques. Patients included in trials are often highly selected and may not represent real world practice. Registries are important to interventional radiologists for several reasons; they reflect prevailing practice and can be used to establish real world standards of care and safety profiles. This information allows individuals and centers to evaluate their outcomes compared with national norms. The British Iliac Angioplasty and Stenting (BIAS) registry is an example of a mature registry that has been collecting data since 2000 and has been reporting outcomes since 2001. This article discusses the evidence to support both endovascular and surgical intervention for aortoiliac occlusive disease, the role of registries, and optimal techniques for aortoiliac intervention. PMID:25435659

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.

Report to the Nation shows cancer death rates dropping

Cancer.gov

The Annual Report to the Nation on the Status of Cancer, 1975–2009, shows that overall cancer death rates continued to decline in the United States among both men and women, among all major racial and ethnic groups, and for all of the most common cancer s

The NHLBI LAM Registry: Prognostic physiological and radiological biomarkers emerge from a 15-year prospective longitudinal analysis.

PubMed

Gupta, Nishant; Lee, Hye-Seung; Ryu, Jay H; Taveira-DaSilva, Angelo M; Beck, Gerald J; Lee, Jar-Chi; McCarthy, Kevin; Finlay, Geraldine A; Brown, Kevin K; Ruoss, Stephen J; Avila, Nilo A; Moss, Joel; McCormack, Francis X

2018-06-22

The natural history of lymphangioleiomyomatosis is mainly derived from retrospective cohort analyses and remains incompletely understood. A National Institutes of Health LAM Registry was established to define the natural history and identify prognostic biomarkers that can help guide management and decision-making in patients with LAM. A linear mixed effects model was employed to compute the rate of decline of FEV1, and identify variables impacting FEV1 decline among 217 registry patients who enrolled from 1998-2001. Prognostic variables associated with progression to death/lung transplantation were identified using a Cox proportional hazard model. Mean annual decline of FEV1 was 89±53 ml/year, and remained remarkably constant regardless of baseline lung function. FEV1 decline was more rapid in those with greater cyst profusion on CT scan (p=0.02), and in premenopausal subjects (118ml/year) compared to postmenopausal subjects (74ml/year), (p=0.003). There were 26 deaths and 43 lung transplants during the evaluation period. Estimated 5-, 10-, 15-, and 20-year transplant-free survival rates were 95%, 85%, 75%, and 64%, respectively. Postmenopausal status (hazard ratio 0.30, p=0.0002) and higher baseline FEV1 (hazard ratio 0.97, p=0.008) or DLCO (hazard ratio 0.97, p=0.001) were independently associated with a lower risk of progression to death or lung transplantation. The median transplant-free survival in patients with LAM is greater than 20 years. Menopausal status as well as structural and physiological markers of disease severity significantly affect the rate of decline of FEV1 and progression to death or lung transplantation in LAM. Copyright © 2018. Published by Elsevier Inc.

Improving hospital death certification in Viet Nam: results of a pilot study implementing an adapted WHO hospital death report form in two national hospitals.

PubMed

Walton, Merrilyn; Harrison, Reema; Chevalier, Anna; Esguerra, Esmond; Van Duong, Dang; Chinh, Nguyen Duc; Giang, Huong

2016-01-01

Viet Nam does not have a system for the national collection of death data that meets international requirements for mortality reporting. It is identified as a 'no-report' country by the WHO. Verbal autopsy reports are used in the community but exclude deaths in hospitals. This project was undertaken in Bach Mai National General Hospital and Viet Duc Surgical and Trauma Hospital in Viet Nam from 1 March 2013 to 31 March 2015. In phase 1, a modified hospital death report form, consistent with the International Statistical Classification of Diseases and Related Health Problems, 10th Revision, was developed. Small group training in use of the report form was delivered to 427 doctors. In phase two, death data were collected, collated and analysed. In phase three, a random sample (7%) of all report forms was checked for accuracy and completeness against medical records. During the 23 months of the study, 3956 deaths were recorded. Across both hospitals, 222 distinct causes of deaths were recorded. Traumatic cerebral oedema was the immediate cause of death (15% of cases, 575/3956 patients), followed by septic shock (13%, 528/3956), brain compression (11%, 416/3956), intracerebral haemorrhage (8%, 336/3956) and pneumonia (5%, 186/3956); 67% (2639/3956) of patients were discharged home to die and 33% (1314/3956) of deaths were due to a road traffic accident, or injury at home or at work. This study confirms the viability of implementing a death report form system compliant with international standards in hospitals in Viet Nam and provides the foundation for introducing a national death report form scheme. These data are critical to comprehensive knowledge of causes of death in Viet Nam. Death data about patients discharged home to die is presented for the first time, with implications for countries where this is a cultural preference.

RSA and registries: the quest for phased introduction of new implants.

PubMed

Nelissen, Rob G H H; Pijls, Bart G; Kärrholm, Johan; Malchau, Henrik; Nieuwenhuijse, Marc J; Valstar, Edward R

2011-12-21

Although the overall survival of knee and hip prostheses at ten years averages 90%, recent problems with several hip and knee prostheses have illustrated that the orthopaedic community, industry, and regulators can still further improve patient safety. Given the early predictive properties of roentgen stereophotogrammetric analysis (RSA) and the meticulous follow-up of national joint registries, these two methods are ideal tools for such a phased clinical introduction. In this paper, we elaborate on the predictive power of RSA within a two-year follow-up after arthroplasty and its relationship to national joint registries. The association between RSA prosthesis-migration data and registry data is evaluated. The five-year rate of revision of RSA-tested total knee replacements was compared with that of non-RSA-tested total knee replacements. Data were extracted from the published results of the national joint registries of Sweden, Australia, and New Zealand. There was a 22% to 35% reduction in the number of revisions of RSA-tested total knee replacements as compared with non-RSA-tested total knee replacements in the national joint registries. Assuming that the total cost of total knee arthroplasty is $37,000 in the United States, a 22% to 35% reduction in the number of revisions (currently close to 55,000 annually) could lead to an estimated annual savings of over $400 million to the health-care system. The phased clinical introduction of new prostheses with two-year RSA results as a qualitative tool could lead to better patient care and could reduce the costs associated with revision total knee arthroplasty. Follow-up in registries is necessary to substantiate these results and to improve post-market surveillance.

Vascular surgical data registries for small computers.

PubMed

Kaufman, J L; Rosenberg, N

1984-08-01

Recent designs for computer-based vascular surgical registries and clinical data bases have employed large centralized systems with formal programming and mass storage. Small computers, of the types created for office use or for word processing, now contain sufficient speed and memory storage capacity to allow construction of decentralized office-based registries. Using a standardized dictionary of terms and a method of data organization adapted to word processing, we have created a new vascular surgery data registry, "VASREG." Data files are organized without programming, and a limited number of powerful logical statements in English are used for sorting. The capacity is 25,000 records with current inexpensive memory technology. VASREG is adaptable to computers made by a variety of manufacturers, and interface programs are available for conversion of the word processor formated registry data into forms suitable for analysis by programs written in a standard programming language. This is a low-cost clinical data registry available to any physician. With a standardized dictionary, preparation of regional and national statistical summaries may be facilitated.

Demonstration of using quieter pavement in Death Valley National Park

DOT National Transportation Integrated Search

2013-06-01

Death Valley National Park provided an environment that allowed a demonstration of : quieter pavement use. Sound measurements near the tire-pavement interface, near the : road, and in areas of frequent human use were conducted and analyses performed ...

The National Violent Death Reporting System: overview and future directions.

PubMed

Blair, Janet M; Fowler, Katherine A; Jack, Shane P D; Crosby, Alexander E

2016-04-01

To describe the National Violent Death Reporting System (NVDRS). This is a surveillance system for monitoring the occurrence of homicides, suicides, unintentional firearm deaths, deaths of undetermined intent, and deaths from legal intervention (excluding legal executions) in the US. This report provides information about the history, scope, data variables, processes, utility, limitations, and future directions of the NVDRS. The NVDRS currently operates in 32 states, with the goal of future expansion to all 50 states, the District of Columbia, and US territories. The system uses existing primary data sources (death certificates, coroner/medical examiner reports, and law enforcement reports), and links them together to provide a comprehensive picture of the circumstances surrounding violent deaths. This report provides an overview of the NVDRS including a description of the system, discussion of its expanded capability, the use of new technologies as the system has evolved, how the data are being used for violence prevention efforts, and future directions. 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/

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

Normal overall mortality rate in Addison's disease, but young patients are at risk of premature death.

PubMed

Erichsen, Martina M; Løvås, Kristian; Fougner, Kristian J; Svartberg, Johan; Hauge, Erik R; Bollerslev, Jens; Berg, Jens P; Mella, Bjarne; Husebye, Eystein S

2009-02-01

Primary adrenal insufficiency (Addison's disease) is a rare autoimmune disease. Until recently, life expectancy in Addison's disease patients was considered normal. To determine the mortality rate in Addison's disease patients. i) Patients registered with Addison's disease in Norway during 1943-2005 were identified through search in hospital diagnosis registries. Scrutiny of the medical records provided diagnostic accuracy and age at diagnosis. ii) The patients who had died were identified from the National Directory of Residents. iii) Background mortality data were obtained from Statistics Norway, and standard mortality rate (SMR) calculated. iv) Death diagnoses were obtained from the Norwegian Death Cause Registry. Totally 811 patients with Addison's disease were identified, of whom 147 were deceased. Overall SMR was 1.15 (95% confidence intervals (CI) 0.96-1.35), similar in females (1.18 (0.92-1.44)) and males (1.10 (0.80-1.39)). Patients diagnosed before the age of 40 had significantly elevated SMR at 1.50 (95% CI 1.09-2.01), most pronounced in males (2.03 (1.19-2.86)). Acute adrenal failure was a major cause of death; infection and sudden death were more common than in the general population. The mean ages at death for females (75.7 years) and males (64.8 years) were 3.2 and 11.2 years less than the estimated life expectancy. Addison's disease is still a potentially lethal condition, with excess mortality in acute adrenal failure, infection, and sudden death in patients diagnosed at young age. Otherwise, the prognosis is excellent for patients with Addison's disease.

Comparison of interventional cardiology in two European countries: a nationwide Internet based registry study.

PubMed

Gudnason, T; Gudnadottir, G S; Lagerqvist, B; Eyjolfsson, K; Nilsson, T; Thorgeirsson, G; Thorgeirsson, G; Andersen, K; James, S

2013-09-30

The practice of interventional cardiology differs between countries and regions. In this study we report the results of the first nation-wide long-term comparison of interventional cardiology in two countries using a common web-based registry. The Swedish Coronary Angiography and Angioplasty Registry (SCAAR) was used to prospectively and continuously collect background-, quality-, and outcome parameters for all coronary angiographies (CA) and percutaneous coronary interventions (PCI) performed in Iceland and Sweden during one year. The rate of CA per million inhabitants was higher in Iceland than in Sweden. A higher proportion of patients had CA for stable angina in Iceland than in Sweden, while the opposite was true for ST elevation myocardial infarction. Left main stem stenosis was more commonly found in Iceland than in Sweden. The PCI rate was similar in the two countries as was the general success rate of PCI, achievement of complete revascularisation and the overall stent use. Drug eluting stents were more commonly used in Iceland (23% vs. 19%). The use of fractional flow reserve (0.2% vs. 10%) and the radial approach (0.6% vs. 33%) was more frequent in Sweden than in Iceland. Serious complications and death were very rare in both countries. By prospectively comparing interventional cardiology in two countries, using a common web based registry online, we have discovered important differences in technique and indications. A discovery such as this can lead to a change in clinical practice and inspire prospective multinational randomised registry trials in unselected, real world populations. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Nipple sparing mastectomy: Surgical and oncological outcomes from a national multicentric registry with 913 patients (1006 cases) over a six year period.

PubMed

Orzalesi, Lorenzo; Casella, Donato; Santi, Caterina; Cecconi, Lorenzo; 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; Cataliotti, Luigi; Bernini, Marco

2016-02-01

Nipple sparing mastectomy is deemed surgically and oncologically safe based on a long lasting literature data from reviews of single institution series. This study aims at evaluating surgical and oncological outcomes of NSM on a large multi-institutional scale, by means of the Italian National registry. In July 2011 a panel of Italian specialists agreed upon and designed a National database of NSM. Centers with at least 150 cancers per year and following the National follow-up schedule guidelines could participate inserting any NSM case performed, retrospectively and prospectively from that moment on. In March 2015 analysis of data was accomplished. Dataset for this study consists of cases performed in the period between January 1st 2009 and December 31st 2014. 913 Women were included in the analysis, for a total of 1006 procedures. Prophylactic mastectomies were 124 (12.3%). MRI utilization increased over time. NSM failure rate, with NAC removal for any reason was 11.5%. NAC necrosis rate was 4.8%. Larger skin-flap necrosis rate was 2.3%. Major surgical complications rate was 4.4%. Oncological outcomes were calculated among primitive EBC cases only: locoregional recurrences rate was 2.9%, NAC recurrence 0.7%. Systemic recurrence rate was 1.0%. Five deaths (0.7%) were registered. More than 10% of NSM procedures are prophylactic mastectomies. MRI is gaining more importance over time. Surgical and oncological results show that NSM is effective. This National multicentric analysis enables a comparison of results with no geographical differences and a "safe" state of the art of NSM in Italy. Copyright © 2015 Elsevier Ltd. All rights reserved.

The Danish Schizophrenia Registry

PubMed Central

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

Aim of database To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. Main variables The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. Descriptive data The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. Conclusion The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data. PMID:27843348

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.

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…

Inaccuracies in oral cavity-pharynx cancer coded as the underlying cause of death on U.S. death certificates, and trends in mortality rates (1999-2010).

PubMed

Polednak, Anthony P

2014-08-01

To enhance surveillance of mortality from oral cavity-pharynx cancer (OCPC) by considering inaccuracies in the cancer site coded as the underlying cause of death on death certificates vs. cancer site in a population-based cancer registry (as the gold standard). A database was used for 9 population-based cancer registries of the Surveillance, Epidemiology and End Results (SEER) Program, including deaths in 1999-2010 for patients diagnosed in 1973-2010. Numbers of deaths and death rates for OCPC in the SEER population were modified for apparent inaccuracies in the cancer site coded as the underlying cause of death. For age groups <65 years, deaths from OCPC were underestimated by 22-35% by using unmodified (vs. modified) numbers, but temporal declines in death rates were still evident in the SEER population and were similar to declines using routine mortality data for the entire U.S. population. Deaths were underestimated by about 70-80% using underlying cause for tonsillar cancers, strongly associated with human papillomavirus (HPV) infection, but a lack of decline in death rates was still evident. Routine mortality statistics based on underlying cause of death underestimate OCPC deaths but demonstrate trends in OCPC death rates that require continued surveillance in view of increasing incidence rates for HPV-related OCPC. Copyright © 2014 Elsevier Ltd. All rights reserved.

Place of death of children with complex chronic conditions: cross-national study of 11 countries.

PubMed

Håkanson, Cecilia; Öhlén, Joakim; Kreicbergs, Ulrika; Cardenas-Turanzas, Marylou; Wilson, Donna M; Loucka, Martin; Frache, Sandra; Giovannetti, Lucia; Naylor, Wayne; Rhee, YongJoo; Ramos, Miguel Ruiz; Teno, Joan; Beernaert, Kim; Deliens, Luc; Houttekier, Dirk; Cohen, Joachim

2017-03-01

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

PubMed

Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

2014-06-07

collection that automatically computes derived variables, and automatically performs basic data quality controls is a good data management practice, that also helps in reducing missing data. We found crucial for success the collaboration with existing national and international registries, cystic fibrosis organisations and patients' associations.

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

PubMed Central

2014-01-01

shared electronic platform for data collection that automatically computes derived variables, and automatically performs basic data quality controls is a good data management practice, that also helps in reducing missing data. We found crucial for success the collaboration with existing national and international registries, cystic fibrosis organisations and patients’ associations. PMID:24908055

Australia and New Zealand Dialysis and Transplant Registry.

PubMed

McDonald, Stephen P

2015-06-01

The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered include demographic details, primary renal disease, type of renal replacement therapy, process measures, and a variety of outcomes. From this data collection a number of themes of work are produced. These include production of Registry reports with an extensive range of national and regional data, a suite of quality assurance reports, key process indicator (KPI) reports, and data sets for a variety of audit and research purposes. The various types of information from the ANZDATA Registry are used in a wide variety of areas, including health services planning, safety and quality programs, and clinical research projects.

Toward the Turkish National Registry System: A Prevalence Study of Total Knee Arthroplasty in Turkey.

PubMed

Ceyhan, Erman; Gursoy, Safa; Akkaya, Mustafa; Ugurlu, Mahmut; Koksal, Ismet; Bozkurt, Murat

2016-09-01

The aim of this pilot study was to analyze the data obtained from a retrospective examination of the records of the existing reimbursement system and through the identification of gaps in the data to create a foundation for a reliable, descriptive national registry system for our country. The Social Security Institution Medical Messenger (MEDULA) records were scanned for the years 2010-2014, and the numbers of total knee arthroplasty applied for a diagnosis of gonarthrosis and the numbers of revision knee arthroplasty were recorded for the country in general. The patients were classified according to age, gender, and bilateral or unilateral surgery. The institution where the surgery was applied, the geographic region and the province were also recorded. A total of 283,400 primary and 9900 revision knee arthroplasty operations were applied in Turkey between 2010 and 2014. Numbers were recorded for each year, and there was found to be an increase between years. For primary knee arthroplasty, the female:male ratio was 67 of 33, and surgery was applied most often between the ages of 60-69 years. Both types of surgery were determined to have been applied most often in second-stage state hospitals. Geographically, both types of surgery were applied most in the Marmara region, with the highest frequency of primary knee arthroplasty in Istanbul and the highest frequency of revision surgery in Ankara. The data obtained from this study will contribute to the creation of the basis for a National Registry System and thereby define more scientific treatment approaches. Copyright © 2016 Elsevier Inc. All rights reserved.

Comparative effectiveness of commonly used devices for carotid artery stenting: an NCDR Analysis (National Cardiovascular Data Registry).

PubMed

Giri, Jay; Kennedy, Kevin F; Weinberg, Ido; Hawkins, Beau M; Press, Marcella Calfon; Drachman, Douglas; McCormick, Daniel J; Aronow, Herbert D; White, Christopher J; Rosenfield, Kenneth; Yeh, Robert W

2014-02-01

This study sought to characterize usage and outcomes of carotid stenting platforms. A variety of stents and embolic protection devices (EPDs) are used for carotid artery stenting. Little is known about current usage patterns and differences in outcomes with these devices. We analyzed 12,135 consecutive carotid stent procedures in the NCDR (National Cardiovascular Data Registry) CARE (Carotid Artery Revascularization and Endarterectomy) registry performed between January 1, 2007 and March 31, 2012. We compared baseline characteristics and crude and multivariable-adjusted rates of in-hospital combined death/stroke among patients treated with Acculink/Accunet (Abbott Laboratories, Abbott Park, Illinois), Xact/Emboshield (Abbott), and Precise/Angioguard (Cordis Corporation, Bridgewater, New Jersey) stent/EPD combinations. In 78.2% of cases, stents were used in conjunction with their specific, corresponding U.S. Food and Drug Administration-approved EPD. The Acculink/Accunet (n = 2,617, 21.6%), Xact/Emboshield (n = 3,507, 28.9%), and Precise/Angioguard (n = 2,696, 22.2%) stent/EPD combinations were used in 72.7% of all cases. The Protégé/SpiderFx (ev3 Endovascular Inc., Plymouth, Minnesota) (n = 453, 3.7%) and Wallstent/Filterwire (Boston Scientific, Natick, Massachusetts) (n = 213, 1.8%) devices were used in a minority of cases. In unadjusted analyses, the Precise/Angioguard system was associated with higher rates of the primary outcome than were the Acculink/Accunet (2.5% vs. 1.8%; p = 0.058) and Xact/Emboshield (2.5% vs. 1.9%; p = 0.14) systems that were not statistically different. In adjusted analyses, differences between Precise/Angioguard and Accunet/Acculink (odds ratio [OR]: 1.48, 95% confidence interval [CI]: 0.89 to 2.47; p = 0.065), Precise/Angioguard and Xact/Emboshield (OR: 1.16, 95% CI: 0.77 to 1.76; p = 0.38), and Xact/Emboshield and Accunet/Acculink (OR: 1.28, 95% CI: 0.82 to 1.97; p = 0.18) remained nonsignificant. In modern U.S. practice, the

Inventory of amphibians and reptiles at Death Valley National Park

USGS Publications Warehouse

Persons, Trevor B.; Nowak, Erika M.

2006-01-01

As part of the National Park Service Inventory and Monitoring Program in the Mojave Network, we conducted an inventory of amphibians and reptiles at Death Valley National Park in 2002-04. Objectives for this inventory were to: 1) Inventory and document the occurrence of reptile and amphibian species occurring at DEVA, primarily within priority sampling areas, with the goal of documenting at least 90% of the species present; 2) document (through collection or museum specimen and literature review) one voucher specimen for each species identified; 3) provide a GIS-referenced list of sensitive species that are federally or state listed, rare, or worthy of special consideration that occur within priority sampling locations; 4) describe park-wide distribution of federally- or state-listed, rare, or special concern species; 5) enter all species data into the National Park Service NPSpecies database; and 6) provide all deliverables as outlined in the Mojave Network Biological Inventory Study Plan. Methods included daytime and nighttime visual encounter surveys, road driving, and pitfall trapping. Survey effort was concentrated in predetermined priority sampling areas, as well as in areas with a high potential for detecting undocumented species. We recorded 37 species during our surveys, including two species new to the park. During literature review and museum specimen database searches, we recorded three additional species from DEVA, elevating the documented species list to 40 (four amphibians and 36 reptiles). Based on our surveys, as well as literature and museum specimen review, we estimate an overall inventory completeness of 92% for Death Valley and an inventory completeness of 73% for amphibians and 95% for reptiles. Key Words: Amphibians, reptiles, Death Valley National Park, Inyo County, San Bernardino County, Esmeralda County, Nye County, California, Nevada, Mojave Desert, Great Basin Desert, inventory, NPSpecies.

77 FR 33237 - Saline Valley Warm Springs Management Plan/Environmental Impact Statement, Death Valley National...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-06-05

... Valley Warm Springs Management Plan/Environmental Impact Statement, Death Valley National Park, Inyo... an Environmental Impact Statement for the Saline Valley Warm Springs Management Plan, Death Valley... analysis process for the Saline Valley Warm Springs Management Plan for Death Valley [[Page 33238...

Temporal changes in the outcomes of patients with diabetes mellitus undergoing percutaneous coronary intervention in the National Heart, Lung, and Blood Institute dynamic registry.

PubMed

Holper, Elizabeth M; Abbott, J Dawn; Mulukutla, Suresh; Vlachos, Helen; Selzer, Faith; McGuire, Darren; Faxon, David P; Laskey, Warren; Srinivas, Vankeepuram S; Marroquin, Oscar C; Jacobs, Alice K

2011-02-01

Patients with diabetes mellitus (DM) are at higher risk for adverse outcomes following percutaneous coronary intervention (PCI). To determine whether outcomes have improved over time, we analyzed data from 2,838 consecutive patients with medically treated DM, including 1,066 patients (37.6%) treated with insulin, in the National Heart, Lung, and Blood Institute Dynamic Registry undergoing PCI registered in waves 1 (1997-1998), 2 (1999), 3 (2001-2002), 4 (2004), and 5 (2006). We compared baseline demographics and 1-year outcomes in the overall cohort and in analyses stratified by recruitment wave and insulin use. Crude mortality rates by chronological wave were 9.5%, 12.5%, 8.9%, 11.6%, and 6.6% (P value(trend) = .33) among those treated with insulin and, respectively, 9.7%, 6.5%, 4.1%, 5.4%, and 4.7% (P value(trend) = .006) among patients treated with oral agents,. The adjusted hazard ratios of death, myocardial infarction (MI), and overall major adverse cardiovascular events (death, MI, revascularization) in insulin-treated patients with DM in waves 2 to 5 as compared with wave 1 were either higher or the same. In contrast, the similar adjusted hazard ratios for oral agent-treated patients with DM were either similar or lower. Significant improvements over time in adverse events by 1 year were detected in patients with DM treated with oral agents. In insulin-treated diabetic patients, despite lower rates of repeat revascularization over time, death and MI following PCI have not significantly improved. These findings underscore the need for continued efforts at optimizing outcomes among patients with DM undergoing PCI, especially those requiring insulin treatment. Copyright © 2011 Mosby, Inc. All rights reserved.

Timing of palliative care needs reporting and aggressiveness of care near the end of life in metastatic lung cancer: A national registry-based study.

PubMed

Goldwasser, François; Vinant, Pascale; Aubry, Régis; Rochigneux, Philippe; Beaussant, Yvan; Huillard, Olivier; Morin, Lucas

2018-05-09

Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

The Turkish Neonatal Jaundice Online Registry: A national root cause analysis

PubMed Central

Erdeve, Omer; Olukman, Ozgur; Ulubas, Dilek; Buyukkale, Gokhan; Narter, Fatma; Tunc, Gaffari; Atasay, Begum; Gultekin, Nazli Dilay; Arsan, Saadet; Koc, Esin

2018-01-01

Background Neonatal jaundice (NNJ) is common, but few root cause analyses based on national quality registries have been performed. An online registry was established to estimate the incidence of NNJ in Turkey and to facilitate a root cause analysis of NNJ and its complications. Methods A multicenter prospective study was conducted on otherwise healthy newborns born at ≥35 weeks of gestation and hospitalized for only NNJ in 50 collaborator neonatal intensive care units across Turkey over a 1-year period. Patients were analyzed for their demographic and clinical characteristics, treatment options, and complications. Results Of the 5,620 patients enrolled, 361 (6.4%) had a bilirubin level ≥25 mg/dL on admission and 13 (0.23%) developed acute bilirubin encephalopathy. The leading cause of hospital admission was hemolytic jaundice, followed by dehydration related to a lack of proper feeding. Although all infants received phototherapy, 302 infants (5.4%) received intravenous immunoglobulin in addition to phototherapy and 132 (2.3%) required exchange transfusion. The infants who received exchange transfusion were more likely to experience hemolytic causes (60.6% vs. 28.1%) and a longer duration of phototherapy (58.5 ± 31.7 vs. 29.4 ± 18.8 h) compared to infants who were not transfused (p < 0.001). The incidence of short-term complications among discharged patients during follow-up was 8.5%; rehospitalization was the most frequent (58%), followed by jaundice for more than 2 weeks (39%), neurological abnormality (0.35%), and hearing loss (0.2%). Conclusions Severe NNJ and bilirubin encephalopathy are still problems in Turkey. Means of identifying at-risk newborns before discharge during routine postnatal care, such as bilirubin monitoring, blood group analysis, and lactation consultations, would reduce the frequency of short- and long-term complications of severe NNJ. PMID:29474382

Incidence and causes of sudden death in U.S. college athletes.

PubMed

Maron, Barry J; Haas, Tammy S; Murphy, Caleb J; Ahluwalia, Aneesha; Rutten-Ramos, Stephanie

2014-04-29

The goal of this study was to reliably define the incidence and causes of sudden death in college student-athletes. The frequency with which cardiovascular-related sudden death occurs in competitive athletes importantly influences considerations for pre-participation screening strategies. We assessed databases (including autopsy reports) from both the U.S. National Registry of Sudden Death in Athletes and the National Collegiate Athletic Association (2002 to 2011). Over the 10-year study period, 182 sudden deaths occurred (age 20 ± 1.7 years; 85% male; 64% white), 52 resulting from suicide (n = 31) or drug abuse (n = 21) and 64 probably or likely attributable to cardiovascular causes (6/year). Of these 64 athletes, 47 had a confirmed post-mortem diagnosis; the most common were hypertrophic cardiomyopathy in 21 and congenital coronary anomalies in 8. The 4,052,369 athlete participations (in 30 sports over 10 years) incurred mortality risks as follows: suicide and drugs combined, 1.3/100,000 athlete participation-years (5 deaths/year); and documented cardiovascular disease, 1.2/100,000 athlete participation-years (4 deaths/year). Notably, cardiovascular deaths were 5-fold more common in African-American athletes than in white athletes (3.8 vs. 0.7/100,000 athlete participation-years; p < 0.01) but did not differ from the general population of the same age and race (p = 0.6). In college student-athletes, risk of sudden death due to cardiovascular disease is relatively low, with mortality rates similar to suicide and drug abuse, but less than expected in the general population, although highest in African-American athletes. A substantial minority of confirmed cardiovascular deaths would not likely have been reliably detected by pre-participation screening with 12-lead electrocardiograms. Copyright © 2014 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Supplement use by women during pregnancy: data from the Massachusetts General Hospital National Pregnancy Registry for Atypical Antipsychotics.

PubMed

Freeman, Marlene P; Sosinsky, Alexandra Z; Moustafa, Danna; Viguera, Adele C; Cohen, Lee S

2016-06-01

Women of reproductive age commonly use integrative treatments. However, the reproductive safety for most complementary products lacks systematic study. We aimed to study the use of supplements by women in a prospective pregnancy registry. The Massachusetts General Hospital National Pregnancy Registry for Atypical Antipsychotics was established to evaluate the reproductive safety of atypical antipsychotics. Exposed and control participants were systematically queried about the use of vitamins and supplements. Slightly greater than half (53.2 %) of the participants eligible for analysis (N = 534) were using at least one vitamin or supplement at the time of enrollment, not including prenatal vitamins or folic acid. The most common supplements used were omega-3 fatty acids (38.0 %), vitamin D (11.0 %), calcium (8.2 %), and iron (4.7 %). Probiotics and melatonin were used by 2.6 and 0.9 %, respectively. In this prospective pregnancy registry, we found that over half of the participants were taking supplements or vitamins other than prenatal vitamins and folic acid. These findings underscore the need for active query on the part of health care providers about the use of supplements during pregnancy, and the need to obtain rigorous reproductive safety and efficacy data for supplements used by pregnant women and reproductive aged women.

National Cancer Patient Registry--a patient registry/clinical database to evaluate the health outcomes of patients undergoing treatment for cancers in Malaysia.

PubMed

Lim, G C C; Azura, D

2008-09-01

Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients.

Acute myeloid leukemia in the real world: why population-based registries are needed

PubMed Central

Lazarevic, Vladimir; Hörstedt, Ann-Sofi; Hagberg, Oskar; Höglund, Martin

2012-01-01

Population-based registries may provide data complementary to that from basic science and clinical intervention studies, all of which are essential for establishing recommendations for the management of patients in the real world. The same quality criteria apply for the evidence-based label, and both high representation and good data quality are crucial in registry studies. Registries with high coverage of the target population reduce the impact of selection on outcome and the subsequent problem with extrapolating data to nonstudied populations. Thus, data useful for clinical decision in situations not well covered by clinical studies can be provided. The potential clinical impact of data from population-based studies is exemplified with analyses from the Swedish Acute Leukemia Registry containing more than 3300 acute myeloid leukemia (AML) patients diagnosed between 1997 and 2006 with a median follow-up of 6.2 years on (1) the role of intensive combination chemotherapy for older patients with AML, (2) the impact of allogeneic stem cell transplantation on survival of younger patients with AML, and (3) the continuing problem with early deaths in acute promyelocytic leukemia. We also present the first Web-based dynamic graph showing the complex interaction between age, performance status, the proportion of patients given intensive treatment, early death rate, complete remission rate, use of allogeneic transplants, and overall survival in AML (non-AML). PMID:22383796

Acute myeloid leukemia in the real world: why population-based registries are needed.

PubMed

Juliusson, Gunnar; Lazarevic, Vladimir; Hörstedt, Ann-Sofi; Hagberg, Oskar; Höglund, Martin

2012-04-26

Population-based registries may provide data complementary to that from basic science and clinical intervention studies, all of which are essential for establishing recommendations for the management of patients in the real world. The same quality criteria apply for the evidence-based label, and both high representation and good data quality are crucial in registry studies. Registries with high coverage of the target population reduce the impact of selection on outcome and the subsequent problem with extrapolating data to nonstudied populations. Thus, data useful for clinical decision in situations not well covered by clinical studies can be provided. The potential clinical impact of data from population-based studies is exemplified with analyses from the Swedish Acute Leukemia Registry containing more than 3300 acute myeloid leukemia (AML) patients diagnosed between 1997 and 2006 with a median follow-up of 6.2 years on (1) the role of intensive combination chemotherapy for older patients with AML, (2) the impact of allogeneic stem cell transplantation on survival of younger patients with AML, and (3) the continuing problem with early deaths in acute promyelocytic leukemia. We also present the first Web-based dynamic graph showing the complex interaction between age, performance status, the proportion of patients given intensive treatment, early death rate, complete remission rate, use of allogeneic transplants, and overall survival in AML (non-AML).

[More than a decade improving medical and judicial certification in mortality statistics of death causes].

PubMed

Cirera, Lluís; Salmerón, Diego; Martínez, Consuelo; Bañón, Rafael María; Navarro, Carmen

2018-06-06

After the return of Spain to democracy and the regional assumption of government powers, actions were initiated to improve the mortality statistics of death causes. The objective of this work was to describe the evolution of the quality activities improvements into the statistics of death causes on Murcia's region during 1989 to 2011. Descriptive epidemiological study of all death documents processed by the Murcia mortality registry. Use of indicators related to the quality of the completion of death in medical and judicial notification; recovery of information on the causes and circumstances of death; and impact on the statistics of ill-defined, unspecific and less specific causes. During the study period, the medical notification without a temporary sequence on the death certificate (DC) has decreased from 46% initial to 21% final (p less than 0.001). Information retrieval from sources was successful in 93% of the cases in 2001 compared to 38%, at the beginning of the period (p less than 0.001). Regional rates of ill-defined and unspecific causes fell more than national ones, and they were in the last year with a differential of 10.3 (p less than 0.001) and 2.8 points (p=0.001), respectively. The medical death certification improved in form and suitability. Regulated recovery of the causes of death and circumstances corrected medical and judicial information. The Murcia's region presented lower rates in less specified causes and ill-defined entities than national averages.

Risk factors for death, stroke, and bleeding in 28,628 patients from the GARFIELD-AF registry: Rationale for comprehensive management of atrial fibrillation.

PubMed

Bassand, Jean-Pierre; Accetta, Gabriele; Al Mahmeed, Wael; Corbalan, Ramon; Eikelboom, John; Fitzmaurice, David A; Fox, Keith A A; Gao, Haiyan; Goldhaber, Samuel Z; Goto, Shinya; Haas, Sylvia; Kayani, Gloria; Pieper, Karen; Turpie, Alexander G G; van Eickels, Martin; Verheugt, Freek W A; Kakkar, Ajay K

2018-01-01

The factors influencing three major outcomes-death, stroke/systemic embolism (SE), and major bleeding-have not been investigated in a large international cohort of unselected patients with newly diagnosed atrial fibrillation (AF). In 28,628 patients prospectively enrolled in the GARFIELD-AF registry with 2-year follow-up, we aimed at analysing: (1) the variables influencing outcomes; (2) the extent of implementation of guideline-recommended therapies in comorbidities that strongly affect outcomes. Median (IQR) age was 71.0 (63.0 to 78.0) years, 44.4% of patients were female, median (IQR) CHA2DS2-VASc score was 3.0 (2.0 to 4.0); 63.3% of patients were on anticoagulants (ACs) with or without antiplatelet (AP) therapy, 24.5% AP monotherapy, and 12.2% no antithrombotic therapy. At 2 years, rates (95% CI) of death, stroke/SE, and major bleeding were 3.84 (3.68; 4.02), 1.27 (1.18; 1.38), and 0.71 (0.64; 0.79) per 100 person-years. Age, history of stroke/SE, vascular disease (VascD), and chronic kidney disease (CKD) were associated with the risks of all three outcomes. Congestive heart failure (CHF) was associated with the risks of death and stroke/SE. Smoking, non-paroxysmal forms of AF, and history of bleeding were associated with the risk of death, female sex and heavy drinking with the risk of stroke/SE. Asian race was associated with lower risks of death and major bleeding versus other races. AC treatment was associated with 30% and 28% lower risks of death and stroke/SE, respectively, compared with no AC treatment. Rates of prescription of guideline-recommended drugs were suboptimal in patients with CHF, VascD, or CKD. Our data show that several variables are associated with the risk of one or more outcomes, in terms of death, stroke/SE, and major bleeding. Comprehensive management of AF should encompass, besides anticoagulation, improved implementation of guideline-recommended therapies for comorbidities strongly associated with outcomes, namely CHF, VascD, and CKD

Registry based trauma outcome: perspective of a developing country.

PubMed

Zafar, H; Rehmani, R; Raja, A J; Ali, A; Ahmed, M

2002-09-01

To report trauma outcome from a developing country based on the Trauma and Injury Severity Scoring (TRISS) method and compare the outcome with the registry data from Major Trauma Outcome Study (MTOS). Registry based audit of all trauma patients over two years. Emergency room of a teaching university hospital. 279 injured patients meeting trauma team activation criteria including all deaths in the emergency room. TRISS methodology to compare expected and observed outcome. W, M, and Z statistics and comparison with MTOS data. 279 patients meeting the trauma triage criteria presented to the emergency room, 235 (84.2%) were men and 44 (15.8%) women. Blunt injury accounted for 204 (73.1%) and penetrating for 75 (26.9%) patients. Seventy two patients had injury severity score of more than 15. Only 18 (6.4%) patients were transported in an ambulance. A total of 142 (50.9%) patients were transferred from other hospitals with a mean prehospital delay of 7.1 hours. M statistic of our study subset was 0.97, indicating a good match between our patients and MTOS cohort. There were 18 deaths with only one unexpected survivor. The expected number of deaths based on MTOS dataset should have been 12. Present injury severity instruments using MTOS coefficients do not accurately correlate with observed survival rates in a developing country.

Surveillance for Violent Deaths -
National Violent Death Reporting System, 18 States, 2014.

PubMed

Fowler, Katherine A; Jack, Shane P D; Lyons, Bridget H; Betz, Carter J; Petrosky, Emiko

2018-02-02

In 2014, approximately 59,000 persons died in the United States as a result of violence-related injuries. This report summarizes data from CDC's National Violent Death Reporting System (NVDRS) regarding violent deaths from 18 U.S. states for 2014. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. 2014. NVDRS collects data from participating states regarding violent deaths. Data are obtained from death certificates, coroner/medical examiner reports, law enforcement reports, and secondary sources (e.g., child fatality review team data, supplemental homicide reports, hospital data, and crime laboratory data). This report includes data from 18 states that collected statewide data for 2014 (Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin). NVDRS collates documents for each death and links deaths that are related (e.g., multiple homicides, a homicide followed by a suicide, or multiple suicides) into a single incident. For 2014, a total of 22,098 fatal incidents involving 22,618 deaths were captured by NVDRS in the 18 states included in this report. The majority of deaths were suicides (65.6%), followed by homicides (22.5%), deaths of undetermined intent (10.0%), deaths involving legal intervention (1.3%) (i.e., deaths caused by law enforcement and other persons with legal authority to use deadly force, excluding legal executions), and unintentional firearm deaths (<1%). The term "legal intervention" is a classification incorporated into the International Classification of Diseases, Tenth Revision (ICD-10) and does not denote the lawfulness or legality of the circumstances surrounding a death caused by law enforcement. Suicides occurred at higher rates among males, non-Hispanic American Indian/Alaska Natives

Oral cancer in Libya and development of regional oral cancer registries: A review.

PubMed

BenNasir, E; El Mistiri, M; McGowan, R; Katz, R V

2015-10-01

The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people.

The design, construction and implementation of a computerised trauma registry in a developing South African metropolitan trauma service.

PubMed

Laing, G L; Bruce, J L; Aldous, C; Clarke, D L

2014-01-01

The Pietermaritzburg Metropolitan Trauma Service formerly lacked a robust computerised trauma registry. This made surgical audit difficult for the purpose of quality of care improvement and development. We aimed to design, construct and implement a computerised trauma registry within our service. Twelve months following its implementation, we sought to examine and report on the quality of the registry. Formal ethical approval to maintain a computerised trauma registry was obtained prior to undertaking any design and development. Appropriate commercial software was sourced to develop this project. The registry was designed as a flat file. A flat file is a plain text or mixed text and binary file which usually contains one record per line or physical record. Thereafter the registry file was launched onto a secure server. This provided the benefits of access security and automated backups. Registry training was provided to clients by the developer. The exercise of data capture was then integrated into the process of service delivery, taking place at the endpoint of patient care (discharge, transfer or death). Twelve months following its implementation, the compliance rates of data entry were measured. The developer of this project managed to design, construct and implement an electronic trauma registry into the service. Twelve months following its implementation the data were extracted and audited to assess the quality. A total of 2640 patient entries were captured onto the registry. Compliance rates were in the order of eighty percent and client satisfaction rates were high. A number of deficits were identified. These included the omission of weekend discharges and underreporting of deaths. The construction and implementation of the computerised trauma registry was the beginning of an endeavour to continue improvements in the quality of care within our service. The registry provided a reliable audit at twelve months post implementation. Deficits and limitations were

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.

[Incidence of proliferative retinopathy and sex-related differences in death rate among patients with diabetes mellitus and sight impairment treated with insulin (according to the data from national diabetic registry)].

PubMed

Tron'ko, N D; Khalangot, N D; Kravchenko, V I; Kul'chinskaia, Ia B; Gur'ianov, V G; Mis'ko, L A

2004-01-01

The article presents the analysis of the occurrence of diabetes mellitus-linked sight impairment and proliferative retinopathy after data of National Diabetes Population Register among patients receiving insulin therapy. The number of women with above mentioned impairments has been found to prevail significantly over that of men. This tendency is also observed among the patients aged to 50 y. o., although in this age group the number of men with diabetes mellitus prevails over that of women. This discrepancy can be explained through higher death rate linked with diabetes mellitus among men as compared with women. Death rate statistics concerning patients with diabetes mellitus complicated with sight impairment for 2003 y. confirms this supposition.

Positive predictive value of cardiac examination, procedure and surgery codes in the Danish National Patient Registry: a population-based validation study

PubMed Central

Adelborg, Kasper; Sundbøll, Jens; Munch, Troels; Frøslev, Trine; Sørensen, Henrik Toft; Bøtker, Hans Erik; Schmidt, Morten

2016-01-01

Objective Danish medical registries are widely used for cardiovascular research, but little is known about the data quality of cardiac interventions. We computed positive predictive values (PPVs) of codes for cardiac examinations, procedures and surgeries registered in the Danish National Patient Registry during 2010–2012. Design Population-based validation study. Setting We randomly sampled patients from 1 university hospital and 2 regional hospitals in the Central Denmark Region. Participants 1239 patients undergoing different cardiac interventions. Main outcome measure PPVs with medical record review as reference standard. Results A total of 1233 medical records (99% of the total sample) were available for review. PPVs ranged from 83% to 100%. For examinations, the PPV was overall 98%, reflecting PPVs of 97% for echocardiography, 97% for right heart catheterisation and 100% for coronary angiogram. For procedures, the PPV was 98% overall, with PPVs of 98% for thrombolysis, 92% for cardioversion, 100% for radiofrequency ablation, 98% for percutaneous coronary intervention, and 100% for both cardiac pacemakers and implantable cardiac defibrillators. For cardiac surgery, the overall PPVs was 99%, encompassing PPVs of 100% for mitral valve surgery, 99% for aortic valve surgery, 98% for coronary artery bypass graft surgery, and 100% for heart transplantation. The accuracy of coding was consistent within age, sex, and calendar year categories, and the agreement between independent reviewers was high (99%). Conclusions Cardiac examinations, procedures and surgeries have high PPVs in the Danish National Patient Registry. PMID:27940630

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.

Presenting an evaluation model of the trauma registry software.

PubMed

Asadi, Farkhondeh; Paydar, Somayeh

2018-04-01

Trauma is a major cause of 10% death in the worldwide and is considered as a global concern. This problem has made healthcare policy makers and managers to adopt a basic strategy in this context. Trauma registry has an important and basic role in decreasing the mortality and the disabilities due to injuries resulted from trauma. Today, different software are designed for trauma registry. Evaluation of this software improves management, increases efficiency and effectiveness of these systems. Therefore, the aim of this study is to present an evaluation model for trauma registry software. The present study is an applied research. In this study, general and specific criteria of trauma registry software were identified by reviewing literature including books, articles, scientific documents, valid websites and related software in this domain. According to general and specific criteria and related software, a model for evaluating trauma registry software was proposed. Based on the proposed model, a checklist designed and its validity and reliability evaluated. Mentioned model by using of the Delphi technique presented to 12 experts and specialists. To analyze the results, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved by the experts and professionals, the final version of the evaluation model for the trauma registry software was presented. For evaluating of criteria of trauma registry software, two groups were presented: 1- General criteria, 2- Specific criteria. General criteria of trauma registry software were classified into four main categories including: 1- usability, 2- security, 3- maintainability, and 4-interoperability. Specific criteria were divided into four main categories including: 1- data submission and entry, 2- reporting, 3- quality control, 4- decision and research support. The presented model in this research has introduced important general and specific criteria of trauma registry software

Impact of B-Type Natriuretic Peptide Level on Risk Stratification of Thromboembolism and Death in Patients With Nonvalvular Atrial Fibrillation　- The Hokuriku-Plus AF Registry.

PubMed

Hayashi, Kenshi; Tsuda, Toyonobu; Nomura, Akihiro; Fujino, Noboru; Nohara, Atsushi; Sakata, Kenji; Konno, Tetsuo; Nakanishi, Chiaki; Tada, Hayato; Nagata, Yoji; Teramoto, Ryota; Tanaka, Yoshihiro; Kawashiri, Masa-Aki; Yamagishi, Masakazu

2018-04-25

B-type natriuretic peptide (BNP) may be a predictor of stroke risk in patients with nonvalvular atrial fibrillation (NVAF); because heart failure is associated with the incidence of stroke in AF patients. However, limited data exist regarding the association between BNP at baseline and risks of thromboembolic events (TE) and death in NVAF patients. We prospectively studied 1,013 NVAF patients (725 men, 72.8±9.7 years old) from the Hokuriku-plus AF Registry to determine the relationship between BNP at baseline and prognosis among Japanese NVAF patients. During the follow-up period (median, 751 days); 31 patients experienced TE and there were 81 cases of TE/all-cause death. For each endpoint we constructed receiver-operating characteristic curves that gave cutoff points of BNP for TE (170 pg/mL) and TE/all-cause death (147 pg/mL). Multivariate analysis with the Cox-proportional hazards model indicated that high BNP was significantly associated with risks of TE (hazard ratio [HR] 3.86; 95% confidence interval [CI] 1.83-8.67; P=0.0003) and TE/all-cause death (HR 2.27; 95% CI 1.45-3.56; P=0.0003). Based on the C-index and net reclassification improvement, the addition of BNP to CHA 2 DS 2 -VASc statistically improved the prediction of TE. In a real-world cohort of Japanese NVAF patients, high BNP was significantly associated with TE and death. Plasma BNP might be a useful biomarker for these adverse clinical events.

I RBH - First Brazilian Hypertension Registry.

PubMed

Jardim, Paulo César Brandão Veiga; Souza, Weimar Kunz Sebba Barroso de; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel Dos Santos

2016-08-01

A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of cardiovascular disease in the country.

The Cerebral Palsy Research Registry: Development and Progress Toward National Collaboration in the United States

PubMed Central

Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.

2011-01-01

Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201

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.

Islet transplantation using donors after cardiac death: report of the Japan Islet Transplantation Registry.

PubMed

Saito, Takuro; Gotoh, Mitsukazu; Satomi, Susumu; Uemoto, Shinji; Kenmochi, Takashi; Itoh, Toshinori; Kuroda, Yoshikazu; Yasunami, Youichi; Matsumoto, Shnichi; Teraoka, Satoshi

2010-10-15

This report summarizes outcomes of islet transplantation employing donors after cardiac death (DCD) between 2004 and 2007 as reported to the Japan Islet Transplantation Registry. Sixty-five islet isolations were performed for 34 transplantations in 18 patients with insulin-dependent diabetes mellitus, including two patients who had prior kidney transplantation. All but one donor (64/65) was DCD at the time of harvesting. Factors influencing criteria for islet release included duration of low blood pressure of the donor, cold ischemic time, and usage of Kyoto solution for preservation. Multivariate analysis selected usage of Kyoto solution as most important. Of the 18 recipients, 8, 4, and 6 recipients received 1, 2, and 3 islet infusions, respectively. Overall graft survival defined as C-peptide level more than or equal to 0.3 ng/mL was 76.5%, 47.1%, and 33.6% at 1, 2, and 3 years, respectively, whereas corresponding graft survival after multiple transplantations was 100%, 80.0%, and 57.1%, respectively. All recipients remained free of severe hypoglycemia while three achieved insulin independence for 14, 79, and 215 days. HbA1c levels and requirement of exogenous insulin were significantly improved in all patients. Islet transplantation employing DCD can ameliorate severe hypoglycemic episodes, significantly improve HbA1c levels, sustain significant levels of C-peptide, and achieve insulin independence after multiple transplantations. Thus, DCD can be an important resource for islet transplantation if used under strict releasing criteria and in multiple transplantations, particularly in countries where heart-beating donors are not readily available.

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

Impact of the 1998 Football World Cup on Suicide Rates in France: Results from the National Death Registry

ERIC Educational Resources Information Center

Encrenaz, Gaelle; Contrand, Benjamin; Leffondre, Karen; Queinec, Raphaelle; Aouba, Albertine; Jougla, Eric; Miras, Alain; Lagarde, Emmanuel

2012-01-01

Our objective was to determine whether the Federation Internationale de Football Association (FIFA) World Cup in 1998 had a short-term impact on the number of suicides in France. Exhaustive individual daily data on suicides from 1979 to 2006 were obtained from the French epidemiological center on the medical causes of death (CepiDC-INSERM;…

[Detection of underlying causes of death among the deceased of Yusho patients by linkage to the national vital statistics data].

PubMed

Kaneko, S; Yoshimura, T; Ikeda, M; Nishisaka, K

2001-05-01

As of January 31, 1996, 292 deaths among registered patients of Yusho were identified by three follow-up studies conducted in 1986, 1990, and 1996. In this study, we attempted to identify underlying causes of death by linkage of the registered data to the National Vital Statistics Data provided by the Management and Coordination Agency of Japan, which included 15 million deaths between 1978 and 1996. The two datasets were linked by matching for six variables; birth year/month/day, death year/month, and sex, along with a variable of death day or death place, or both. The matched cases were 203 among 235 deaths between 1978 and 1996 (matching rate was 86%). Among the 203 deaths, 58 underlying causes of death were newly identified, 146 causes of death were already grasped by the follow-up studies, and 31 deaths did not have matching pair in the National Vital Statistics data. Among the 146 deaths, 110 causes of death were concordant with each other, however, 35 causes of death were completely discord. The reason of the discordance and the unmatched deaths might be due to difference in information of the matching variables in the two datasets. In order to conduct an efficient follow-up study of Yusho patients, identification of underlying causes of death by linkage to the National Vital Statistics Date is evitable. For that, we need to substitute basic information in the Yusho database to those compatible to the National civil registration system.

Implications from Under-reporting at Lifetime, Death Certificate Notifications and Trace-back on the Recorded Incidence of a "Newly" Established Population-based Cancer Registry.

PubMed

Holleczek, B; Brenner, H

2016-01-01

Population-based cancer registries (CRs) are powerful tools for measuring cancer burden and progress against cancer. The study's objective was to investigate the effects of under-reporting at lifetime, death certificate notifications, and trace-back on the incidence a newly established population-based CR may record during its initial 15 years of operation. Using cancer data of nine CRs of the SEER programme we performed model calculations to investigate temporal trends of the recorded incidence that might be expected if registration started in 1995 with gradually increasing proportions of cancers reported to the CR. It was assumed that the CR obtains all death certificates providing cancer as the underlying cause of death. Different scenarios with regard to the development of the proportions of cancers reported to the CR and the use of trace-back were evaluated. Our model calculations demonstrated that the inclusion of cancers notified from death certificates which were diagnosed prior to the start of registration and which attribute to the incidence estimates of the year of death ('prevalent' cases) may compensate under-reporting typically observed right after the start of a CR. The recorded incidence may even be overestimated during the first years of registration, if large amounts of prevalent cancers are notified from death certificates (e.g. overestimation of lung cancer incidence by 8% and 21% in the first year of registration, if the proportions of cases reported were 50% and 70% in that year, overestimation of myeloma incidence still exceeding 5% after eight years of registration, if the proportion of cases reported to the CR had reached 97.5% after six years). Trace-back may effectively reduce the recorded surplus cancer cases. During the initial years of registration, the inclusion of prevalent cancers from death certificates may compensate the higher amount of underreporting right after the start of a CR. Accurate incidence estimates may nevertheless be

Cardiac arrest risk standardization using administrative data compared to registry data.

PubMed

Grossestreuer, Anne V; Gaieski, David F; Donnino, Michael W; Nelson, Joshua I M; Mutter, Eric L; Carr, Brendan G; Abella, Benjamin S; Wiebe, Douglas J

2017-01-01

Methods for comparing hospitals regarding cardiac arrest (CA) outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data. Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905) compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919). When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838) compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831). All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data. Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.

Risk stratification of patients with severe heart failure awaiting heart transplantation-prospective national registry POLKARD HF.

PubMed

Zieliński, T; Browarek, A; Zembala, M; Sadowski, J; Zakliczyński, M; Przybylowski, P; Roguski, K; Kosakowska, A B; Korewicki, J

2009-10-01

Most methods used in the risk assessment of heart transplant candidates do not include new biomarkers. The aim of the study was to examine the value of NTproBNP and hsCRP and their combined use together with HFSS score in the risk assessment of patients with heart failure enlisted for heart transplantation. Data of 658 patients enlisted for heart transplantation in all active transplantation centers were stored in a prospective registry. The composite end point-death or urgent transplantation was recorded during the follow-up. Death or urgent transplantation was recorded in 161 (24%) of pts. 102 (15%) patients died and 59 (9%) were transplanted urgently. Kaplan-Meier curves for risk of death or urgent transplantation where highly significant when pts were stratified by the quartiles of NT proBNP (P < .000001) or quartiles according to the hsCRP level on admission (P < .002). In the multivariate Cox proportional hazard model, the significance was observed for NTproBNP (P < .01) and HFSS (P < .02), and borderline significance for hsCRP (P = .057). When ROC analyses of the area under the curve (AUC) values were considered, AUC area was for HFSS - 0.645, for NTproBNP - 0.653 and for hsCRP - 0.566. When all those variables were included together in the model, the AUC value rose to 0.6943. Based on those results a weighted risk model with all three parameters was proposed. HFSS, NTproBNP and hsCRP levels are independent stratification variables of survival or need for urgent heart transplantation. Their predictive value is moderately increased when they are analyzed together.

Clinical features of sarcoidosis associated pulmonary hypertension: Results of a multi-national registry.

PubMed

Baughman, Robert P; Shlobin, Oksana A; Wells, Athol U; Alhamad, Esam H; Culver, Daniel A; Barney, Joseph; Cordova, Francis C; Carmona, Eva M; Scholand, Mary Beth; Wijsenbeek, Marlies; Ganesh, Sivagini; Birring, Surinder S; Kouranos, Vasilis; O'Hare, Lanier; Baran, Joanne M; Cal, Joseph G; Lower, Elyse E; Engel, Peter J; Nathan, Steven D

2018-06-01

Pulmonary hypertension (PH) is a significant cause of morbidity and mortality in sarcoidosis. We established a multi-national registry of sarcoidosis associated PH (SAPH) patients. Sarcoidosis patients with PH confirmed by right heart catheterization (RHC) were studied. Patients with pulmonary artery wedge pressure (PAWP) of 15 mmHg or less and a mean pulmonary artery pressure (mPAP) ≥ 25 Hg were subsequently analyzed. Data collected included hemodynamics, forced vital capacity (FVC), diffusion capacity of carbon monoxide (DL CO ), chest x-ray, and 6-min walk distance (6MWD). A total of 176 patients were analyzed. This included 84 (48%) cases identified within a year of entry into the registry and 94 (53%) with moderate to severe PH. There was a significant correlation between DL CO percent predicted (% pred) andmPAP (Rho = -0.228, p = 0.0068) and pulmonary vascular resistance (PVR) (Rho = -0.362, p < 0.0001). PVR was significantly higher in stage 4 disease than in stage 0 or 1 disease (p < 0.05 for both comparisons). About two-thirds of the SAPH patients came from the United States (US). There was a significant difference in the rate of treatment between US (67.5%) versus non-US (86%) (Chi Square 11.26, p = 0.0008) sites. The clinical features of SAPH were similar across multiple centers in the US, Europe, and the Middle East. The severity of SAPH was related to reduced DLCO. There were treatment differences between the US and non-US centers. Copyright © 2018. Published by Elsevier Ltd.

Diabetes hospitalizations and deaths in a cohort of treatment-seeking illicit drug users

PubMed Central

Aregbesola, Alex; Olubamwo, Olubunmi; Ronkainen, Kimmo; Tiihonen, Jari; Föhr, Jaana; Kauhanen, Jussi

2018-01-01

Background: Studies on diabetes among illicit drug users are scarce in Finland. This study aimed to describe hospitalization and death due to diabetes among treatment-seeking illicit drug users. Methods: Information of 4817 treatment-seeking drug users (3365 men and 1452 women) aged 11–65 years (mean 24.5 years) was linked to the Finnish national hospital discharge register and the national death registry to identify those clients who were hospitalized or died from diabetes mellitus during 1997–2013. Results: Fifty-three persons (42 men and 11 women) had primary diagnoses of diabetes, with a total of 146 hospitalizations (121 among men and 25 among women). The total length of stay among men (1183 days) far exceeded those of women (138 days). Overall, type 1 diabetes was the main contributor to hospitalizations (67%, n = 98/146). The proportion of Type 1 diabetes with complications was 31% in men (n = 37/121) and 44% in women (n = 11/25). All cases of deaths due to diabetes (n = 7) occurred in men. Conclusion: Diabetes hospitalizations were mainly due to Type 1 diabetes. Longer length of hospital stay was observed in men, and all diabetes deaths occurred among men. Male drug users and drug users in general would require more support to reduce morbidity and mortality due to diabetes.

[Potential for the survey of quality indicators based on a national emergency department registry : A systematic literature search].

PubMed

Hörster, A C; Kulla, M; Brammen, D; Lefering, R

2018-06-01

Emergency department processes are often key for successful treatment. Therefore, collection of quality indicators is demanded. A basis for the collection is systematic, electronic documentation. The development of paper-based documentation into an electronic and interoperable national emergency registry is-besides the establishment of quality management for emergency departments-a target of the AKTIN project. The objective of this research is identification of internationally applied quality indicators. For the investigation of the current status of quality management in emergency departments based on quality indicators, a systematic literature search of the database PubMed, the Cochrane Library and the internet was performed. Of the 170 internationally applied quality indicators, 25 with at least two references are identified. A total of 10 quality indicators are ascertainable by the data set. An enlargement of the data set will enable the collection of seven further quality indicators. The implementation of data of care behind the emergency processes will provide eight additional quality indicators. This work was able to show that the potential of a national emergency registry for the establishment of quality indicators corresponds with the international systems taken into consideration and could provide a comparable collection of quality indicators.

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.

Impact of Low Diastolic Blood Pressure on Risk of Cardiovascular Death in Elderly Patients With Coronary Artery Disease After Revascularization　- The CREDO-Kyoto Registry Cohort-1.

PubMed

Kai, Hisashi; Kimura, Takeshi; Fukuda, Kenji; Fukumoto, Yoshihiro; Kakuma, Tatsuyuki; Furukawa, Yutaka

2016-04-25

We investigated the effects of age and low diastolic blood pressure (DBP) on cardiovascular death in patients with coronary artery disease (CAD) after coronary revascularization. Stable, chronic CAD patients after coronary revascularization in the CREDO-Kyoto registry cohort-1 were allocated to the Young (≤64 years, n=2,619), Young-Old (65-74 years, n=2,932), and Old-Old (≥75 years, n=1,629) groups. Kaplan-Meier analysis showed that the crude cumulative incidence of cardiovascular death was higher in Young-Old patients with DBP <70 mmHg (P<0.001) and in Old-Old patients with DBP <60 mmHg (P=0.017), but not <70 mmHg (P=0.629), compared with each counterpart. Low DBP did not increase cardiovascular death in young patients. After adjustments with independent predictors, DBP <60 mmHg did not increase the cardiovascular death in the Old-Old group (HR=1.579 [95% CI, 0.944-2.642], P=0.082) and DBP <70 mmHg remained a predictor in the Young-Old group (HR=1.665 [1.094-2.532], P=0.017). On multivariate stepwise Cox proportional hazard regression analysis, independent predictors for cardiovascular death in low DBP patients were creatinine clearance (CCr; inversely), prior cerebrovascular disease, and aortic disease in the Young-Old group and CCr (inversely) and malignancy in the Old-Old group. DBP <60 mmHg was not an independent factor for predicting cardiovascular death in Old-Old revascularized CAD patients, whereas DBP <70 mmHg remained a predictor in the Young-Old. (Circ J 2016; 80: 1232-1241).

Analyses of Radiation and Mesothelioma in the US Transuranium and Uranium Registries

PubMed Central

Fulcher, Keri; Nagarajan, Sumitha; McCord, Stacey; Fallahian, Naz Afarin; Hoffman, Heather J.; Haver, Cary; Tolmachev, Sergei

2013-01-01

Objectives. We examined the relationship between radiation and excess deaths from mesothelioma among deceased nuclear workers who were part of the US Transuranium and Uranium Registries. Methods. We performed univariate analysis with SAS Version 9.1 software. We conducted proportionate mortality ratio (PMR) and proportionate cancer mortality ratio (PCMR) analyses using the National Institute for Occupational Safety and Health Life Table Analysis System with the referent group being all deaths in the United States. Results. We found a PMR of 62.40 (P < .05) and a PCMR of 46.92 (P < .05) for mesothelioma. PMRs for the 4 cumulative external radiation dose quartiles were 61.83, 57.43, 74.46, and 83.31. PCMRs were 36.16, 47.07, 51.35, and 67.73. The PMR and PCMR for trachea, bronchus, and lung cancer were not significantly elevated. Conclusions. The relationship between cumulative external radiation dose and the PMR and PCMR for mesothelioma suggests that external radiation at nuclear facilities is associated with an increased risk of mesothelioma. The lack of a significantly elevated PMR and PCMR for trachea, bronchus, and lung cancer suggests that asbestos did not confound this relationship. PMID:23409888

Self-Harm, Methadone Use and Drug-Related Deaths amongst Those Registered As Being of No Fixed Abode or Homeless in Ireland.

PubMed

Glynn, R W; Lynn, E; Griffin, E; Fitzgerald, M; Ward, M

2017-10-10

This work aims to contribute to the evidence base regarding the health of those who experience homelessness in Ireland by collating data on methadone use, drug-related deaths and emergency department presentations due to self-harm. Data from the Central Methadone Treatment List (CTL), National Self-Harm Registry Ireland and the National Drug-Related Deaths Index were analysed. The percentage on the CTL registered as being of no fixed abode (NFA) or homeless increased from 2% to 7% from 2011-2014. The absolute number of presentations with deliberate self-harm from those of NFA increased by 49% from 2007-2014. The number of drug-related deaths amongst those of NFA or homeless and who died in Dublin fluctuated from 2004-13 with an overall upward trend. There is an urgent need to adequately resource and coordinate those services which aim to address factors (social and health inequalities, mental ill-health and addiction) which lead people into - and prevent them exiting from - homelessness.

Patient registries: useful tools for clinical research in myasthenia gravis.

PubMed

Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

2012-12-01

Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

Central venous catheter infections in home parenteral nutrition patients: Outcomes from Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care.

PubMed

Ross, Vicki M; Guenter, Peggi; Corrigan, Mandy L; Kovacevich, Debra; Winkler, Marion F; Resnick, Helaine E; Norris, Tina L; Robinson, Lawrence; Steiger, Ezra

2016-12-01

Home parenteral nutrition (HPN) is a high-cost, complex nutrition support therapy that requires the use of central venous catheters. Central line-associated bloodstream infections (CLABSIs) are among the most serious risks of this therapy. Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care (Sustain registry) provides the most current and comprehensive data for studying CLABSI among a national cohort of HPN patients in the United States. This is the first Sustain registry report detailing longitudinal data on CLABSI among HPN patients. To describe CLABSI rates for HPN patients followed in the Sustain registry from 2011-2014. Descriptive, χ 2 , and t tests were used to analyze data from the Sustain registry. Of the 1,046 HPN patients from 29 sites across the United States, 112 (10.7%) experienced 194 CLABSI events during 223,493 days of HPN exposure, for an overall CLABSI rate of 0.87 episodes/1,000 parenteral nutrition-days. Although the majority of patients were female (59%), adult (87%), white (75%), and with private insurance or Medicare (69%), CLABSI episodes per 1,000 parenteral nutrition-days were higher for men (0.69 vs 0.38), children (1.17 vs 0.35), blacks (0.91 vs 0.41), and Medicaid recipients (1.0 vs 0.38 or 0.39). Patients with implanted ports or double-lumen catheters also had more CLABSIs than those with peripherally inserted or central catheters or single-lumen catheters. Staphylococci were the most commonly reported pathogens. These data support findings of smaller studies about CLABSI risk for children and by catheter type and identify new potential risk factors, including gender, race, and insurance type. Additional studies are needed to determine effective interventions that will reduce HPN-associated CLABSI. Copyright © 2016 Association for Professionals in Infection Control and Epidemiology, Inc. Published by Elsevier Inc. All rights reserved.

Surveillance for Violent Deaths —
National Violent Death Reporting System, 18 States, 2014

PubMed Central

Jack, Shane P.D.; Lyons, Bridget H.; Betz, Carter J.; Petrosky, Emiko

2018-01-01

Problem/Condition In 2014, approximately 59,000 persons died in the United States as a result of violence-related injuries. This report summarizes data from CDC’s National Violent Death Reporting System (NVDRS) regarding violent deaths from 18 U.S. states for 2014. Results are reported by sex, age group, race/ethnicity, marital status, location of injury, method of injury, circumstances of injury, and other selected characteristics. Reporting Period Covered 2014. Description of System NVDRS collects data from participating states regarding violent deaths. Data are obtained from death certificates, coroner/medical examiner reports, law enforcement reports, and secondary sources (e.g., child fatality review team data, supplemental homicide reports, hospital data, and crime laboratory data). This report includes data from 18 states that collected statewide data for 2014 (Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin). NVDRS collates documents for each death and links deaths that are related (e.g., multiple homicides, a homicide followed by a suicide, or multiple suicides) into a single incident. Results For 2014, a total of 22,098 fatal incidents involving 22,618 deaths were captured by NVDRS in the 18 states included in this report. The majority of deaths were suicides (65.6%), followed by homicides (22.5%), deaths of undetermined intent (10.0%), deaths involving legal intervention (1.3%) (i.e., deaths caused by law enforcement and other persons with legal authority to use deadly force, excluding legal executions), and unintentional firearm deaths (<1%). The term “legal intervention” is a classification incorporated into the International Classification of Diseases, Tenth Revision (ICD-10) and does not denote the lawfulness or legality of the circumstances surrounding a death caused by law enforcement. Suicides

The National Marrow Donor Program and Be The Match Registry | NIH MedlinePlus the Magazine

MedlinePlus

... Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the ... The Match Registry are nonprofit organizations dedicated to creating an opportunity for all patients to receive the ...

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.

Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

PubMed Central

Hume, Keith M.; Crotty, Catherine A.; Simmons, Christopher J.; Neumeister, Michael W.; Chung, Kevin C.

2014-01-01

Clinical data registries are commonly used worldwide and are implemented for a variety of purposes ranging from physician or facility clinic logs for tracking patients, collecting outcomes data, to measuring quality improvement or safety of medical devices. In the United States, the Food and Drug Administration has used data collected through registries to facilitate the drug and device regulatory process, ongoing surveillance during the product life-cycle, and for disease appraisals. Furthermore, the Centers for Medicare and Medicaid Services, in certain instances, base registry participation and submitting data to registries as factors for reimbursement decisions. The purpose of this article is to discuss the use of clinical data registries, the role that medical specialty societies, in particular the American Society of Plastic Surgeons and The Plastic Surgery Foundation, can have in the development and management of registries, and the opportunities for registry use in Plastic Surgery. As outcomes data are becoming essential measures of quality healthcare delivery, participating in registry development and centralized data collection has become a critical effort for Plastic Surgery to engage in to proactively participate in the national quality and performance measurement agenda. PMID:23806935

Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

PubMed

Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B

2014-01-01

Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

Report to the nation finds continuing declines in cancer death rates

Cancer.gov

Death rates from all cancers combined for men, women, and children continued to decline in the United States between 2004 and 2008, according to the Annual Report to the Nation on the Status of Cancer, 1975-2008. The overall rate of new cancer diagnoses,

The making of a pan-European organ transplant registry.

PubMed

Smits, Jacqueline M; Niesing, Jan; Breidenbach, Thomas; Collett, Dave

2013-03-01

A European patient registry to track the outcomes of organ transplant recipients does not exist. As knowledge gleaned from large registries has already led to the creation of standards of care that gained widespread support from patients and healthcare providers, the European Union initiated a project that would enable the creation of a European Registry linking currently existing national databases. This report contains a description of all functional, technical, and legal prerequisites, which upon fulfillment should allow for the seamless sharing of national longitudinal data across temporal, geographical, and subspecialty boundaries. To create a platform that can effortlessly link multiple databases and maintain the integrity of the existing national databases crucial elements were described during the project. These elements are: (i) use of a common dictionary, (ii) use of a common database and refined data uploading technology, (iii) use of standard methodology to allow uniform protocol driven and meaningful long-term follow-up analyses, (iv) use of a quality assurance mechanism to guarantee completeness and accuracy of the data collected, and (v) establishment of a solid legal framework that allows for safe data exchange. © 2012 The Authors Transplant International © 2012 European Society for Organ Transplantation. Published by Blackwell Publishing Ltd.

Revision for prosthetic joint infection following hip arthroplasty: Evidence from the National Joint Registry.

PubMed

Lenguerrand, E; Whitehouse, M R; Beswick, A D; Jones, S A; Porter, M L; Blom, A W

2017-06-01

We used the National Joint Registry for England, Wales, Northern Ireland and the Isle of Man (NJR) to investigate the risk of revision due to prosthetic joint infection (PJI) for patients undergoing primary and revision hip arthroplasty, the changes in risk over time, and the overall burden created by PJI. We analysed revision total hip arthroplasties (THAs) performed due to a diagnosis of PJI and the linked index procedures recorded in the NJR between 2003 and 2014. The cohort analysed consisted of 623 253 index primary hip arthroplasties, 63 222 index revision hip arthroplasties and 7585 revision THAs performed due to a diagnosis of PJI. The prevalence, cumulative incidence functions and the burden of PJI (total procedures) were calculated. Overall linear trends were investigated with log-linear regression. We demonstrated a prevalence of revision THA due to prosthetic joint infection of 0.4/100 procedures following primary and 1.6/100 procedures following revision hip arthroplasty. The prevalence of revision due to PJI in the three months following primary hip arthroplasty has risen 2.3-fold (95% confidence interval (CI) 1.3 to 4.1) between 2005 and 2013, and 3.0-fold (95% CI 1.1 to 8.5) following revision hip arthroplasty. Over 1000 procedures are performed annually as a consequence of hip PJI, an increase of 2.6-fold between 2005 and 2013. Although the risk of revision due to PJI following hip arthroplasty is low, it is rising and, coupled with the established and further predicted increased incidence of both primary and revision hip arthroplasty, this represents a growing and substantial treatment burden. Cite this article : E. Lenguerrand, M. R. Whitehouse, A. D. Beswick, S. A. Jones, M. L. Porter, A. W. Blom. Revision for prosthetic joint infection following hip arthroplasty: Evidence from the National Joint Registry. Bone Joint Res 2017;6:391-398. DOI: 10.1302/2046-3758.66.BJR-2017-0003.R1. © 2017 Lenguerrand et al.

Cardiac arrest risk standardization using administrative data compared to registry data

PubMed Central

Gaieski, David F.; Donnino, Michael W.; Nelson, Joshua I. M.; Mutter, Eric L.; Carr, Brendan G.; Abella, Benjamin S.; Wiebe, Douglas J.

2017-01-01

Background Methods for comparing hospitals regarding cardiac arrest (CA) outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data. Methods and results Two risk standardization logistic regression models were developed using 2453 patients treated from 2000–2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the “gold standard” with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876–0.905) compared to a registry c-statistic of 0.907 (95% CI: 0.895–0.919). When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799–0.838) compared to a registry c-statistic of 0.810 (95% CI: 0.788–0.831). All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data. Conclusions Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA. PMID:28783754

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.

The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

PubMed

Dehmer, Gregory J; Jennings, Jonathan; Madden, Ruth A; Malenka, David J; Masoudi, Frederick A; McKay, Charles R; Ness, Debra L; Rao, Sunil V; Resnic, Frederic S; Ring, Michael E; Rumsfeld, John S; Shelton, Marc E; Simanowith, Michael C; Slattery, Lara E; Weintraub, William S; Lovett, Ann; Normand, Sharon-Lise

2016-01-19

Public reporting of health care data continues to proliferate as consumers and other stakeholders seek information on the quality and outcomes of care. Medicare's Hospital Compare website, the U.S. News & World Report hospital rankings, and several state-level programs are well known. Many rely heavily on administrative data as a surrogate to reflect clinical reality. Clinical data are traditionally more difficult and costly to collect, but more accurately reflect patients' clinical status, thus enhancing the validity of quality metrics. We describe the public reporting effort being launched by the American College of Cardiology and partnering professional organizations using clinical data from the National Cardiovascular Data Registry (NCDR) programs. This hospital-level voluntary effort will initially report process of care measures from the percutaneous coronary intervention (CathPCI) and implantable cardioverter-defibrillator (ICD) registries of the NCDR. Over time, additional process, outcomes, and composite performance metrics will be reported. Copyright © 2016 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

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

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

Ethical aspects of registry-based research in the Nordic countries.

PubMed

Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

2015-01-01

National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

Ethical aspects of registry-based research in the Nordic countries

PubMed Central

Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

2015-01-01

National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies. PMID:26648756

The Brazilian Twin Registry.

PubMed

Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F

2016-12-01

The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.

Child Maltreatment Fatalities in Children under 5: Findings from the National Violence Death Reporting System

ERIC Educational Resources Information Center

Klevens, Joanne; Leeb, Rebecca T.

2010-01-01

Objective: To describe the distribution of child maltreatment fatalities of children under 5 by age, sex, race/ethnicity, type of maltreatment, and relationship to alleged perpetrator using data from the National Violent Death Reporting System (NVDRS). Study design: Two independent coders reviewed information from death certificates, medical…

Developing a national radiation oncology registry: From acorns to oaks.

PubMed

Palta, Jatinder R; Efstathiou, Jason A; Bekelman, Justin E; Mutic, Sasa; Bogardus, Carl R; McNutt, Todd R; Gabriel, Peter E; Lawton, Colleen A; Zietman, Anthony L; Rose, Christopher M

2012-01-01

The National Radiation Oncology Registry (NROR) is a collaborative initiative of the Radiation Oncology Institute and the American Society of Radiation Oncology, with input and guidance from other major stakeholders in oncology. The overarching mission of the NROR is to improve the care of cancer patients by capturing reliable information on treatment delivery and health outcomes. The NROR will collect patient-specific radiotherapy data electronically to allow for rapid comparison of the many competing treatment modalities and account for effectiveness, outcome, utilization, quality, safety, and cost. It will provide benchmark data and quality improvement tools for individual practitioners. The NROR steering committee has determined that prostate cancer provides an appropriate model to test the concept and the data capturing software in a limited number of sites. The NROR pilot project will begin with this disease-gathering treatment and outcomes data from a limited number of treatment sites across the range of practice; once feasibility is proven, it will scale up to more sites and diseases. When the NROR is fully implemented, all radiotherapy facilities, along with their radiation oncologists, will be solicited to participate in it. With the broader participation of the radiation oncology community, NROR has the potential to serve as a resource for determining national patterns of care, gaps in treatment quality, comparative effectiveness, and hypothesis generation to identify new linkages between therapeutic processes and outcomes. The NROR will benefit radiation oncologists and other care providers, payors, vendors, policy-makers, and, most importantly, cancer patients by capturing reliable information on population-based radiation treatment delivery. Copyright © 2012 (c) 2010 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved. Published by Elsevier Inc. All rights reserved.

Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology

PubMed Central

Chen, Vivien W.; Eheman, Christie R.; Johnson, Christopher J.; Hernandez, Monique N.; Rousseau, David; Styles, Timothy S.; West, Dee W.; Hsieh, Meichin; Hakenewerth, Anne M.; Celaya, Maria O.; Rycroft, Randi K.; Wike, Jennifer M.; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G.; Zhang, Kevin B.

2015-01-01

Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Reinvestment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control. PMID:25419602

Utility of the National Death Index in ascertaining mortality in acquired immunodeficiency syndrome surveillance.

PubMed

Trepka, Mary Jo; Maddox, Lorene M; Lieb, Spencer; Niyonsenga, Theophile

2011-07-01

To assess the utility of the National Death Index (NDI) in improving the ascertainment of deaths among people diagnosed with acquired immunodeficiency syndrome (AIDS), the authors determined the number and characteristics of additional deaths identified through NDI linkage not ascertained by using standard electronic linkage with Florida Vital Records and the Social Security Administration's Death Master File. Records of people diagnosed with acquired immunodeficiency syndrome between 1993 and 2007 in Florida were linked to the NDI. The demographic characteristics and reported human immunodeficiency virus (HIV) transmission modes of people whose deaths were identified by using the NDI were compared with those whose deaths were ascertained by standard linkage methods. Of the 15,094 submitted records, 719 had confirmed matches, comprising 2.1% of known deaths (n = 34,504) within the cohort. Hispanics, males, people 40 years of age or older, and injection drug users were overrepresented among deaths ascertained only by the NDI. In-state deaths comprised 59.0% of newly identified deaths, and human immunodeficiency virus was less likely to be a cause of death among newly identified compared with previously identified deaths. The newly identified deaths were not previously ascertained principally because of slight differences in personal identifying information and could have been identified through improved linkages with Florida Vital Records.

The national review of asthma deaths: what did we learn and what needs to change?

PubMed Central

2015-01-01

Key points The 2014 UK National Review of Asthma Deaths identified potentially preventable factors in two-thirds of the medical records of cases scrutinised 45% of people who died from asthma did not call for or receive medical assistance in their final fatal attack Overall asthma management, acute and chronic, in primary and secondary care was judged to be good in less than one-fifth of those who died There was a failure by doctors and nurses to identify and act on risk factors for asthma attacks and asthma death The rationale for diagnosing asthma was not evident in a considerable number of cases, and there were inaccuracies related to the completion of medical certificates of the cause of death in over half of the cases considered for the UK National Review of Asthma Deaths Educational aims To increase awareness of some of the findings of the recent UK National Review of Asthma Deaths and previous similar studies To emphasise the need for accurate diagnosis of asthma, and of the requirements for completion of medical certificates of the cause of death To consider areas for improving asthma care and prevention of attacks and avoidable deaths Summary Despite the development and publication of evidence-based asthma guidelines nearly three decades ago, potentially preventable factors are repeatedly identified in studies of the care provided for patients who die from asthma. The UK National Review of Asthma Deaths (NRAD), a confidential enquiry, was no exception: major preventable factors were identified in two-thirds of asthma deaths. Most of these factors, such as inappropriate prescription and failure to provide patients with personal asthma action plans (PAAPs), could possibly have been prevented had asthma guidelines been implemented. NRAD involved in-depth scrutiny by clinicians of the asthma care for 276 people who were classified with asthma as the underlying cause of death in real-life. A striking finding was that a third of these patients did not actually

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

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

The Establishment of an Inflammatory Breast Cancer Registry and Biospecimen Repository

DTIC Science & Technology

2004-08-01

will be presented at the San Antonio Breast Cancer Conference in December, 2004. The clinical data include the observation that approximately one third...of IBC patients are initially diagnosed as having mastitis and are treated with up to five months of antibiotics before the diagnosis of cancer is...developed a national registry of patients with IBC which contains standardized clinical , epidemiological and pathological information. Our registry includes

JBEI Registry

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

Ham, Timothy

2008-12-01

The JBEI Registry is a software to store and manage to a database of biological parts. It is intended to be used as a web service that is accessed via a web browser. It is also capable of running as a desktop program for a single user. The registry software stores, indexes, categories, and allows users to enter, search, retrieve, and contruct biological constructs in silico. It is also able to communicate with other Registries for data sharing and exchange.

Modest Associations Between Electronic Health Record Use and Acute Myocardial Infarction Quality of Care and Outcomes: Results From the National Cardiovascular Data Registry.

PubMed

Enriquez, Jonathan R; de Lemos, James A; Parikh, Shailja V; Simon, DaJuanicia N; Thomas, Laine E; Wang, Tracy Y; Chan, Paul S; Spertus, John A; Das, Sandeep R

2015-11-01

In 2009, national legislation promoted wide-spread adoption of electronic health records (EHRs) across US hospitals; however, the association of EHR use with quality of care and outcomes after acute myocardial infarction (AMI) remains unclear. Data on EHR use were collected from the American Hospital Association Annual Surveys (2007-2010) and data on AMI care and outcomes from the National Cardiovascular Data Registry Acute Coronary Treatment and Interventions Outcomes Network Registry-Get With The Guidelines. Comparisons were made between patients treated at hospitals with fully implemented EHR (n=43 527), partially implemented EHR (n=72 029), and no EHR (n=9270). Overall EHR use increased from 82.1% (183/223) hospitals in 2007 to 99.3% (275/277) hospitals in 2010. Patients treated at hospitals with fully implemented EHRs had fewer heparin overdosing errors (45.7% versus 72.8%; P<0.01) and a higher likelihood of guideline-recommended care (adjusted odds ratio, 1.40 [confidence interval, 1.07-1.84]) compared with patients treated at hospitals with no EHR. In non-ST-segment-elevation AMI, fully implemented EHR use was associated with lower risk of major bleeding (adjusted odds ratio, 0.78 [confidence interval, 0.67-0.91]) and mortality (adjusted odds ratio, 0.82 [confidence interval, 0.69-0.97]) compared with no EHR. In ST-segment-elevation MI, outcomes did not significantly differ by EHR status. EHR use has risen to high levels among hospitals in the National Cardiovascular Data Registry. EHR use was associated with less frequent heparin overdosing and modestly greater adherence to acute MI guideline-recommended therapies. In non-ST-segment-elevation MI, slightly lower adjusted risk of major bleeding and mortality were seen in hospitals implemented with full EHRs; however, in ST-segment-elevation MI, differences in outcomes were not seen. © 2015 American Heart Association, Inc.

National and international registries of rare bleeding disorders.

PubMed

Peyvandi, Flora; Spreafico, Marta

2008-09-01

Rare bleeding disorders (RBDs) are autosomal recessive disorders, representing 3-5% of all the inherited deficiencies of coagulation factors. Their frequency in the general population ranges from 1:500,000 to 1:2 millions. In countries with a high rate of consanguineous marriages RBDs occur more frequently, representing a significant clinical and social problem. Patients affected by RBDs have a wide spectrum of clinical symptoms that vary from a mild or moderate bleeding tendency to potentially serious or life-threatening haemorrhages. Current treatment is based on both replacement therapy and non-transfusional treatment. However, despite the existence of several concentrates, there is no Factor V concentrate available for the treatment of Factor V deficiency, yet. In 2004, to improve the understanding of RBDs prevalence, diagnosis and treatments, the Rare Bleeding Disorders database (RBDD, www.rbdd.org) was developed. The RBDD project allowed the collection of epidemiological information on 3,230 patients from 66 Centres scattered all over the world. Epidemiological data can also be derived from the annual survey of the World Federation of Hemophilia (www.wfh.org) and from other existing national registries. However, these data are not homogenous and global surveys provide a non-real picture of the distribution of RBDs, as about 50% of data refers to European patients. Hence, we focused on Europe and, thanks to a European project (EN-RBD), we set up a network of 10 Treatment Centres to develop a homogeneous communication tool for inserting, managing and viewing information on RBD patients (www.rbdd.eu). This on-line database resulted to be a powerful tool to improve the quality of data collection. Preliminary results showed that a homogeneous and harmonized data collection using a unique model will help to have more accurate data for statistical analysis.

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer

PubMed Central

González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Taruscio, Domenica; Lochmüller, Hanns

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries. PMID:29214177

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

PubMed

Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

Utility of the National Death Index in Ascertaining Mortality in Acquired Immunodeficiency Syndrome Surveillance

PubMed Central

Trepka, Mary Jo; Maddox, Lorene M.; Lieb, Spencer; Niyonsenga, Theophile

2011-01-01

To assess the utility of the National Death Index (NDI) in improving the ascertainment of deaths among people diagnosed with acquired immunodeficiency syndrome (AIDS), the authors determined the number and characteristics of additional deaths identified through NDI linkage not ascertained by using standard electronic linkage with Florida Vital Records and the Social Security Administration’s Death Master File. Records of people diagnosed with acquired immunodeficiency syndrome between 1993 and 2007 in Florida were linked to the NDI. The demographic characteristics and reported human immunodeficiency virus (HIV) transmission modes of people whose deaths were identified by using the NDI were compared with those whose deaths were ascertained by standard linkage methods. Of the 15,094 submitted records, 719 had confirmed matches, comprising 2.1% of known deaths (n = 34,504) within the cohort. Hispanics, males, people 40 years of age or older, and injection drug users were overrepresented among deaths ascertained only by the NDI. In-state deaths comprised 59.0% of newly identified deaths, and human immunodeficiency virus was less likely to be a cause of death among newly identified compared with previously identified deaths. The newly identified deaths were not previously ascertained principally because of slight differences in personal identifying information and could have been identified through improved linkages with Florida Vital Records. PMID:21540319

Pregnancy Registries

MedlinePlus

... is compared with women who have not taken medicine during pregnancy. Enrolling in a pregnancy exposure registry can help ... help. Pregnant Women Health Professionals Find a Registry Medicine and Pregnancy More in Women's Health Research OWH Research and ...

Establishing a harmonized haemophilia registry for countries with developing health care systems.

PubMed

Alzoebie, A; Belhani, M; Eshghi, P; Kupesiz, A O; Ozelo, M; Pompa, M T; Potgieter, J; Smith, M

2013-09-01

Over recent decades tremendous progress has been made in diagnosing and treating haemophilia and, in resource-rich countries, life expectancy of people with haemophilia (PWH) is now close to that of a healthy person. However, an estimated 70% of PWH are not diagnosed or are undertreated; the majority of whom live in countries with developing health care systems. In these countries, designated registries for people with haemophilia are often limited and comprehensive information on the natural history of the disease and treatment outcomes is lacking. Taken together, this means that planning efforts for future treatment and care of affected individuals is constrained in countries where it is most needed. Establishment of standardized national registries in these countries would be a step towards obtaining reliable sociodemographic and clinical data for an entire country. A series of consensus meetings with experts from widely differing countries with different health care systems took place to discuss concerns specific to countries with developing health care systems. As a result of these discussions, recommendations are made on parameters to include when establishing and harmonizing national registries. Such recommendations should enable countries with developing health care systems to establish standardized national haemophilia registries. Although not a primary objective, the recommendations should also help standardized data collation on an international level, enabling treatment and health care trends to be monitored across groups of countries and providing data for advocacy purposes. Greater standardization of data collation should have implications for optimizing resources for haemophilia care both nationally and internationally. © 2013 John Wiley & Sons Ltd.

Incidence and predictors of in-hospital non-cardiac death in patients with acute heart failure.

PubMed

Wakabayashi, Kohei; Sato, Naoki; Kajimoto, Katsuya; Minami, Yuichiro; Mizuno, Masayuki; Keida, Takehiko; Asai, Kuniya; Munakata, Ryo; Murai, Koji; Sakata, Yasushi; Suzuki, Hiroshi; Takano, Teruo

2017-08-01

Patients with acute heart failure (AHF) commonly have multiple co-morbidities, and some of these patients die in the hospital from causes other than aggravated heart failure. However, limited information is available on the mode of death in patients with AHF. Therefore, the present study was performed to determine the incidence and predictors of in-hospital non-cardiac death in patients with AHF, using the Acute Decompensated Heart Failure Syndromes (ATTEND) registry Methods: The ATTEND registry included 4842 consecutive patients with AHF admitted between April 2007-September 2011. The primary endpoint of the present study was in-hospital non-cardiac death. A stepwise regression model was used to identify the predictors of in-hospital non-cardiac death. The incidence of all-cause in-hospital mortality was 6.4% ( n=312), and the incidence was 1.9% ( n=93) and 4.5% ( n=219) for non-cardiac and cardiac causes, respectively. Old age was associated with in-hospital non-cardiac death, with a 42% increase in the risk per decade (odds 1.42, p=0.004). Additionally, co-morbidities including chronic obstructive pulmonary disease (odds 1.98, p=0.034) and anaemia (odds 1.17 (per 1.0 g/dl decrease), p=0.006) were strongly associated with in-hospital non-cardiac death. Moreover, other predictors included low serum sodium levels (odds 1.05 (per 1.0 mEq/l decrease), p=0.045), high C-reactive protein levels (odds 1.07, p<0.001) and no statin use (odds 0.40, p=0.024). The incidence of in-hospital non-cardiac death was markedly high in patients with AHF, accounting for 30% of all in-hospital deaths in the ATTEND registry. Thus, the prevention and management of non-cardiac complications are vital to prevent acute-phase mortality in patients with AHF, especially those with predictors of in-hospital non-cardiac death.

EPA Facility Registry Service (FRS): CERCLIS

EPA Pesticide Factsheets

This data provides location and attribute information on Facilities regulated under the Comprehensive Environmental Responsibility Compensation and Liability Information System (CERCLIS) for a intranet web feature service . The data provided in this service are obtained from EPA's Facility Registry Service (FRS). The FRS is an integrated source of comprehensive (air, water, and waste) environmental information about facilities, sites or places. This service connects directly to the FRS database to provide this data as a feature service. FRS creates high-quality, accurate, and authoritative facility identification records through rigorous verification and management procedures that incorporate information from program national systems, state master facility records, data collected from EPA's Central Data Exchange registrations and data management personnel. Additional Information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

One-year clinical outcome of biodegradable polymer sirolimus-eluting stent in all-comers population. Insight from the ULISSE registry (ULtimaster Italian multicenter all comerS Stent rEgistry).

PubMed

Godino, Cosmo; Beneduce, Alessandro; Ferrante, Giuseppe; Ielasi, Alfonso; Pivato, Andrea Carlo; Chiarito, Mauro; Cappelletti, Alberto; Perfetti, Giulia; Magni, Valeria; Prati, Eugenio; Falcone, Stefania; Pierri, Adele; De Martini, Stefano; Montorfano, Matteo; Parisi, Rosario; Rutigliano, David; Locuratolo, Nicola; Anzuini, Angelo; Tespilli, Maurizio; Margonato, Alberto; Benassi, Alberto; Briguori, Carlo; Fabbiocchi, Franco; Reimers, Bernhard; Bartorelli, Antonio; Colombo, Antonio

2018-06-01

This study was designed to confirm in a large population of unselected patients the promising results of Ultimaster® biodegradable polymer sirolimus-eluting stent (BP-SES) already shown in previous trial. ULISSE is an observational, multicenter, national registry evaluating all patients undergoing PCI with the Ultimaster® BP-SES. Incidence of 1-year TLF (cardiac death or target vessel MI or clinically indicated TLR) was the primary endpoint. Pre-specified subgroup analysis was performed for diabetic patients and for those with lesion longer than 25 mm, bifurcation and CTO lesions. 1660 patients were enrolled in 9 Italian cardiology centers, 82% were males, mean age of 68 ± 10 years, and 29% were diabetics. Overall 2422 lesions were treated, 65% type B2/C lesions, 7% CTOs, 17% bifurcations and 38% long lesions. The incidence of 1-year TLF was 5%, with 3.2% of clinically indicated TLR. TLF occurred in 8% of the patients with diabetes mellitus, and 7% in bifurcation, 6.7% in CTO and 6.2% in long lesions. Definite overall ST was 0.9%, and 1.2% in patients treated for type B2/C lesions. Multivariate logistic regression analysis identified stenting on unprotected LMT (OR = 4.80), stenting on ISR lesion (OR = 3.19) and need for rotational atherectomy (OR = 6.24) as the strongest independent predictors of TLF. The results of this national all-comers registry show that the Ultimaster® BP-SES real-world performance was comparable with that observed in the clinical trial, with low rate of primary endpoint and TLR. Long term follow-up will be necessary to prove the theoretical advantage of the BP-SES over time. Copyright © 2017. Published by Elsevier B.V.

[WebSurvCa: web-based estimation of death and survival probabilities in a cohort].

PubMed

Clèries, Ramon; Ameijide, Alberto; Buxó, Maria; Vilardell, Mireia; Martínez, José Miguel; Alarcón, Francisco; Cordero, David; Díez-Villanueva, Ana; Yasui, Yutaka; Marcos-Gragera, Rafael; Vilardell, Maria Loreto; Carulla, Marià; Galceran, Jaume; Izquierdo, Ángel; Moreno, Víctor; Borràs, Josep M

2018-01-19

Relative survival has been used as a measure of the temporal evolution of the excess risk of death of a cohort of patients diagnosed with cancer, taking into account the mortality of a reference population. Once the excess risk of death has been estimated, three probabilities can be computed at time T: 1) the crude probability of death associated with the cause of initial diagnosis (disease under study), 2) the crude probability of death associated with other causes, and 3) the probability of absolute survival in the cohort at time T. This paper presents the WebSurvCa application (https://shiny.snpstats.net/WebSurvCa/), whereby hospital-based and population-based cancer registries and registries of other diseases can estimate such probabilities in their cohorts by selecting the mortality of the relevant region (reference population). Copyright © 2017 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

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.

Intravenous contrast extravasation during CT: a national data registry and practice quality improvement initiative.

PubMed

Dykes, Thomas M; Bhargavan-Chatfield, Mythreyi; Dyer, Raymond B

2015-02-01

Establish 3 performance benchmarks for intravenous contrast extravasation during CT examinations: extravasation frequency, distribution of extravasation volumes, and severity of injury. Evaluate the effectiveness of implementing practice quality improvement (PQI) methodology in improving performance for these 3 benchmarks. The Society of Abdominal Radiology and ACR developed a registry collecting data for contrast extravasation events. The project includes a PQI initiative allowing for process improvement. As of December 2013, a total of 58 radiology practices have participated in this project, and 32 practices have completed the 2-cycle PQI. There were a total of 454,497 contrast-enhanced CT exams and 1,085 extravasation events. The average extravasation rate is 0.24%. The median extravasation rate is 0.21%. Most extravasations (82.9%) were between 10 mL and 99 mL. The majority of injuries, 94.6%, are mild in severity, with 4.7% having moderate and 0.8% having severe injuries. Data from practices that completed the PQI process showed a change in the average extravasation rate from 0.28% in the first 6 months to 0.23% in the second 6 months, and the median extravasation rate dropped from 0.25% to 0.16%, neither statistically significant. The distribution of extravasation volumes and the severity of injury did not change between the first and second measurement periods. National performance benchmarks for contrast extravasation rate, distribution of volumes of extravasate, and distribution of severity of injury are established through this multi-institutional practice registry. The application of PQI failed to have a statistically significant positive impact on any of the 3 benchmarks. Copyright © 2015 American College of Radiology. Published by Elsevier Inc. All rights reserved.

Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

PubMed

Peterson, Jennifer

2016-01-01

The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue

Understanding the patient perspective on research access to national health records databases for conduct of randomized registry trials.

PubMed

Avram, Robert; Marquis-Gravel, Guillaume; Simard, François; Pacheco, Christine; Couture, Étienne; Tremblay-Gravel, Maxime; Desplantie, Olivier; Malhamé, Isabelle; Bibas, Lior; Mansour, Samer; Parent, Marie-Claude; Farand, Paul; Harvey, Luc; Lessard, Marie-Gabrielle; Ly, Hung; Liu, Geoffrey; Hay, Annette E; Marc Jolicoeur, E

2018-07-01

Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. We assessed patient's preferences regarding use of personal information to link their research records with national health databases, as part of a hypothetical randomized registry trial. Cardiology patients were invited to complete an anonymous self-reported survey that ascertained preferences related to the concept of accessing government health databases for research, the type of personal identifiers to be shared and the type of follow-up preferred as participants in a hypothetical trial. A total of 590 responders completed the survey (90% response rate), the majority of which were Caucasians (90.4%), male (70.0%) with a median age of 65years (interquartile range, 8). The majority responders (80.3%) would grant researchers access to health administrative databases for screening and follow-up. To this end, responders endorsed the recording of their personal identifiers by researchers for future record linkage, including their name (90%), and health insurance number (83.9%), but fewer responders agreed with the recording of their social security number (61.4%, p<0.05 with date of birth as reference). Prior participation in a trial predicted agreement for granting researchers access to the administrative databases (OR: 1.69, 95% confidence interval: 1.03-2.90; p=0.04). The majority of Cardiology patients surveyed were supportive of use of their personal identifiers to access administrative health databases and conduct long-term monitoring in the context of a randomized registry trial. Copyright © 2018 Elsevier Ireland Ltd. All rights reserved.

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 deaths, 30 as indirect obstetric deaths, and 32 as fortuitous deaths. Among the late pregnancy-related deaths (>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.

32 CFR 700.815 - Deaths.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 32 National Defense 5 2010-07-01 2010-07-01 false Deaths. 700.815 Section 700.815 National Defense... § 700.815 Deaths. The commanding officer, in the event of the death of any person within his or her command, shall ensure that the cause of death and the circumstances under which death occurred are...

32 CFR 700.815 - Deaths.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 32 National Defense 5 2014-07-01 2014-07-01 false Deaths. 700.815 Section 700.815 National Defense... § 700.815 Deaths. The commanding officer, in the event of the death of any person within his or her command, shall ensure that the cause of death and the circumstances under which death occurred are...

32 CFR 700.815 - Deaths.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 32 National Defense 5 2012-07-01 2012-07-01 false Deaths. 700.815 Section 700.815 National Defense... § 700.815 Deaths. The commanding officer, in the event of the death of any person within his or her command, shall ensure that the cause of death and the circumstances under which death occurred are...

32 CFR 700.815 - Deaths.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 32 National Defense 5 2011-07-01 2011-07-01 false Deaths. 700.815 Section 700.815 National Defense... § 700.815 Deaths. The commanding officer, in the event of the death of any person within his or her command, shall ensure that the cause of death and the circumstances under which death occurred are...

32 CFR 700.815 - Deaths.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 32 National Defense 5 2013-07-01 2013-07-01 false Deaths. 700.815 Section 700.815 National Defense... § 700.815 Deaths. The commanding officer, in the event of the death of any person within his or her command, shall ensure that the cause of death and the circumstances under which death occurred are...

Does gynecologic malignancy predict likelihood of a tertiary palliative care unit hospital admission? A comparison of local, provincial and national death rates.

PubMed

Pilkey, Jana; Demers, Chantale; Chochinov, Harvey; Venkatesan, Nithya

2012-12-01

The purpose of this study was to determine whether the presence of gynecologic malignancies predicts the likelihood of a tertiary palliative care unit hospital admission. In this study, patients admitted to a specialized tertiary palliative care unit (TPCU) with gynecologic malignancies were compared to national and provincial death rates to determine if gynecologic malignancy predicts admission, and subsequent death, in a TPCU. Eighty-two gynecologic cancer patients were admitted to our TPCU over the 5- year study period. Out of all cancer deaths in the TPCU, death from ovarian cancer was 3.7% compared with 2.4% (p = 0.0068) of all cancer deaths in Manitoba and 2.3% (p = 0.0043) of all cancer deaths in Canada. Cervical cancer accounted for 1.7% of all our patients deaths compared with 0.7% (p = 0.0001) provincially and 0.6% (p = 0.0001) nationally. Uterine cancer deaths were not significantly different from the provincial and national death rates, whereas vulvar and fallopian cancers were too rare to allow for statistical analysis. Gynecologic cancers may be predictive of admission to a palliative care unit.

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.

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.

ResearchMatch: A National Registry to Recruit Volunteers for Clinical Research

PubMed Central

Harris, Paul A.; Scott, Kirstin W; Lebo, Laurie; Hassan, NikNik; Lighter, Chad; Pulley, Jill

2013-01-01

The authors designed ResearchMatch, a disease-neutral, web-based recruitment registry to help match individuals who wish to participate in clinical research studies with researchers actively searching for volunteers throughout the United States. In this article, they describe ResearchMatch’s stakeholders, workflow model, technical infrastructure, and, for the registry’s first 19 months of operation, utilization metrics. Having launched volunteer registration tools in November 2009 and researcher registration tools in March 2010, ResearchMatch had, as of June 2011, registered 15,871 volunteer participants from all 50 states. The registry was created as a collaborative project for institutions in the Clinical and Translational Science Awards (CTSA) consortium. Also as of June 2011, a total of 751 researchers from 61 participating CTSA institutions had registered to use the tool to recruit participants into 540 active studies and trials. ResearchMatch has proven successful in connecting volunteers with researchers, and the authors are currently evaluating regulatory and workflow options to open access to researchers at non-CTSA institutions. PMID:22104055

In-hospital outcome in patients with ST elevation myocardial infarction and right bundle branch block. A sub-study from RENASICA II, a national multicenter registry.

PubMed

Juárez-Herrera, Ursulo; Jerjes Sánchez, Carlos; González-Pacheco, Héctor; Martínez-Sánchez, Carlos

2010-01-01

Compare in-hospital outcome in patients with ST-elevation myocardial infarction with right versus left bundle branch block. RENASICA II, a national Mexican registry enrolled 8098 patients with final diagnosis of acute coronary syndrome secondary to ischemic heart disease. In 4555 STEMI patients, 545 had bundle branch block, 318 (58.3%) with right and 225 patients with left (41.6%). Both groups were compared in terms of in-hospital outcome through major cardiovascular adverse events; (cardiovascular death, recurrent ischemia and reinfarction). Multivariable analysis was performed to identify in-hospital mortality risk among right and left bundle branch block patients. There were not statistical differences in both groups regarding baseline characteristics, time of ischemia, myocardial infarction location, ventricular dysfunction and reperfusion strategies. In-hospital outcome in bundle branch block group was characterized by a high incidence of major cardiovascular adverse events with a trend to higher mortality in patients with right bundle branch block (OR 1.70, CI 1.19 - 2.42, p < 0.003), compared to left bundle branch block patients. In this sub-study right bundle branch block accompanying ST-elevation myocardial infarction of any location at emergency room presentation was an independent predictor of high in-hospital mortality.

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.

The national database of hospital-based cancer registries: a nationwide infrastructure to support evidence-based cancer care and cancer control policy in Japan.

PubMed

Higashi, Takahiro; Nakamura, Fumiaki; Shibata, Akiko; Emori, Yoshiko; Nishimoto, Hiroshi

2014-01-01

Monitoring the current status of cancer care is essential for effective cancer control and high-quality cancer care. To address the information needs of patients and physicians in Japan, hospital-based cancer registries are operated in 397 hospitals designated as cancer care hospitals by the national government. These hospitals collect information on all cancer cases encountered in each hospital according to precisely defined coding rules. The Center for Cancer Control and Information Services at the National Cancer Center supports the management of the hospital-based cancer registry by providing training for tumor registrars and by developing and maintaining the standard software and continuing communication, which includes mailing lists, a customizable web site and site visits. Data from the cancer care hospitals are submitted annually to the Center, compiled, and distributed as the National Cancer Statistics Report. The report reveals the national profiles of patient characteristics, route to discovery, stage distribution, and first-course treatments of the five major cancers in Japan. A system designed to follow up on patient survival will soon be established. Findings from the analyses will reveal characteristics of designated cancer care hospitals nationwide and will show how characteristics of patients with cancer in Japan differ from those of patients with cancer in other countries. The database will provide an infrastructure for future clinical and health services research and will support quality measurement and improvement of cancer care. Researchers and policy-makers in Japan are encouraged to take advantage of this powerful tool to enhance cancer control and their clinical practice.

Sudden death in sports among young adults in Norway.

PubMed

Solberg, Erik Ekker; Gjertsen, Finn; Haugstad, Erlend; Kolsrud, Lars

2010-06-01

The aim of the study was to explore sudden cardiac death during physical activity in young adults in Norway. This retrospective study examined adults aged 15-34 years during the period 1990-1997. The Cause of Death Registry was used to identify cases of sudden cardiac death in sports. These cases were validated with information from medical records and autopsy reports. Twenty-three sports-related sudden deaths (22 men), mean age 27 years (17-34 years), were identified. Causes of death were myocardial infarction (11), myocarditis (5), conduction abnormalities (2), aortic stenosis (1), cardiac rupture (1), hypertrophic obstructive cardiomyopathy (1), congenital coronary anomaly (1), and coronary sclerosis without defined infarction (1). The deaths were distributed across different types of sports activities. The incidence of deaths among physically active young men was 0.9 per 100,000. The number of myocardial infarctions is higher than expected. The incidence is similar to that found in other studies. A vast majority of the cases of death were men.

Continuous palliative sedation until death: practice after introduction of the Dutch national guideline.

PubMed

Swart, Siebe J; van der Heide, Agnes; Brinkkemper, Tijn; van Zuylen, Lia; Perez, Roberto; Rietjens, Judith

2012-09-01

In 2005, a national palliative guideline was launched in The Netherlands. The authors describe the practice of continuous palliative sedation until death (CPS) after the introduction of this guideline. In 2008, a random sample of physicians (n=1580) were asked to fill out a questionnaire regarding the last patient in whom they had provided CPS until death. The response was 38%. In all, 82% of the respondents were aware of the existence of the national guideline. Dyspnoea, pain and physical exhaustion were most often mentioned as decisive indications for continuous sedation. The decision to use sedation was discussed with all competent patients, but in 18% this merely involved informing the patient. Life expectancy at the start of continuous sedation was estimated to be less than 2 weeks in 97% of the cases. In 14%, the physicians had felt pressure to start the sedation, predominantly from patients and relatives. Physicians were present at the start of the sedation in 81% of the cases. Midazolam was used to induce the sedation in 92%. Overall, 41% of the physicians estimated that continuous sedation had hastened death to some extent. Most physicians thought that patients' complaints were adequately relieved by continuous sedation, that relatives were satisfied and that a good quality of dying was achieved. Continuous palliative sedation practice in The Netherlands largely reflects the recommendations from the national guideline. Issues needing further attention are the pressure felt by physicians to start continuous sedation and the potential life-shortening effect as mentioned by the physicians.

Assessing the readiness of precision medicine interoperabilty: An exploratory study of the National Institutes of Health genetic testing registry.

PubMed

Ronquillo, Jay G; Weng, Chunhua; Lester, William T

2017-11-17

  Precision medicine involves three major innovations currently taking place in healthcare:  electronic health records, genomics, and big data.  A major challenge for healthcare providers, however, is understanding the readiness for practical application of initiatives like precision medicine.   To better understand the current state and challenges of precision medicine interoperability using a national genetic testing registry as a starting point, placed in the context of established interoperability formats.   We performed an exploratory analysis of the National Institutes of Health Genetic Testing Registry.  Relevant standards included Health Level Seven International Version 3 Implementation Guide for Family History, the Human Genome Organization Gene Nomenclature Committee (HGNC) database, and Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT).  We analyzed the distribution of genetic testing laboratories, genetic test characteristics, and standardized genome/clinical code mappings, stratified by laboratory setting. There were a total of 25472 genetic tests from 240 laboratories testing for approximately 3632 distinct genes.  Most tests focused on diagnosis, mutation confirmation, and/or risk assessment of germline mutations that could be passed to offspring.  Genes were successfully mapped to all HGNC identifiers, but less than half of tests mapped to SNOMED CT codes, highlighting significant gaps when linking genetic tests to standardized clinical codes that explain the medical motivations behind test ordering.  Conclusion:  While precision medicine could potentially transform healthcare, successful practical and clinical application will first require the comprehensive and responsible adoption of interoperable standards, terminologies, and formats across all aspects of the precision medicine pipeline.

Workload and time management in central cancer registries: baseline data and implication for registry staffing.

PubMed

Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

2012-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

Workload and Time Management in Central Cancer Registries: Baseline Data and Implication for Registry Staffing

PubMed Central

Chapman, Susan A.; Mulvihill, Linda; Herrera, Carolina

2015-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions, together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey. Results indicate that registries faced reductions in budgeted staffing from 2008–2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing, case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however, estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines. PMID:23493024

Paul Coverdell National Acute Stroke Registry Surveillance - four states, 2005-2007.

PubMed

George, Mary G; Tong, Xin; McGruder, Henraya; Yoon, Paula; Rosamond, Wayne; Winquist, Andrea; Hinchey, Judith; Wall, Hilary K; Pandey, Dilip K

2009-11-06

Each year, approximately 795,000 persons in the United States experience a new or recurrent stroke. Data from the prototype phase (2001-2004) of the Paul Coverdell National Acute Stroke Registry (PCNASR) suggested that numerous acute stroke patients did not receive treatment according to established guidelines. This report summarizes PCNASR data collected during 2005-2007 from Georgia, Illinois, Massachusetts, and North Carolina, the first states to have PCNASRs implemented in and led by state health departments. PCNASR was established by CDC in 2001 to track and improve the quality of hospital-based acute stroke care. The prototype phase (2001-2004) registries were led by CDC-funded clinical investigators in academic and medical institutions, whereas the full implementation of the 2005-2007 statewide registries was led by CDC-funded state health departments. Health departments in each state recruit hospitals to collect data. To be included in PCNASR, patients must be aged >or=18 years and have a clinical diagnosis of acute ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, or transient ischemic attack (TIA) or an International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code indicative of a stroke or TIA. Data for patients who are already hospitalized at the time of stroke are not included. The following 10 performance measures of care, based on established guidelines for care of acute stroke patients, were developed by CDC in partnership with neurologists who specialize in stroke care: 1) received deep venous thrombosis prophylaxis, 2) received antithrombotic therapy at discharge, 3) received anticoagulation therapy for atrial fibrillation, 4) received tissue plasminogen activator (among eligible patients), 5) received antithrombotic therapy within 48 hours of admission or by the end of the second hospital day, 6) received lipid level testing, 7) received dysphagia screening, 8) received stroke education, 9

Changes in the management and comorbidities of acromegaly over three decades: the French Acromegaly Registry.

PubMed

Maione, Luigi; Brue, Thierry; Beckers, Albert; Delemer, Brigitte; Petrossians, Patrick; Borson-Chazot, Françoise; Chabre, Olivier; François, Patrick; Bertherat, Jérôme; Cortet-Rudelli, Christine; Chanson, Philippe

2017-05-01

Acromegaly is a rare disease associated with chronic multisystem complications. National registries have been created in several countries. The French Registry contains data on acromegaly epidemiology, management and comorbidities recorded over more than three decades, retrospectively until 1999 and prospectively from 1999 to 2012. Data could be analyzed for 999 of the 1034 patients included in the registry (46% males). Disease control, defined as IGF-I normalization (adjusted for age and sex), was achieved in 75% of patients at the last follow-up visit. Half the patients with uncontrolled disease had IGF-I levels below 1.5 times the upper limit of normal (ULN). The proportion of patients with surgically cured disease did not change markedly over time, whereas the proportion of patients with uncontrolled disease fell and the proportion of patients with medically controlled disease rose. Cardiovascular, metabolic, respiratory and rheumatologic comorbidities and their outcomes were recorded for most patients, and no noteworthy overall deterioration was noted over time. Cancer occurred in 10% of patients, for a standardized incidence ratio of 1.34 (95% CI: 0.94-1.87) in men and 1.24 (0.77-1.73) in women. Forty-one patients died during follow-up, for a standardized mortality ratio of 1.05 (0.70-1.42). Most deaths were due to cancer. The majority of patients with acromegaly now have successful disease control thanks to the multistep management. The incidence of comorbidities following diagnosis of acromegaly is very low. Life expectancy is now close to that of the general population, probably owing to better management of the GH/IGF-I excess and comorbidities. © 2017 European Society of Endocrinology.

Emergency Department Intubation Success With Succinylcholine Versus Rocuronium: A National Emergency Airway Registry Study.

PubMed

April, Michael D; Arana, Allyson; Pallin, Daniel J; Schauer, Steven G; Fantegrossi, Andrea; Fernandez, Jessie; Maddry, Joseph K; Summers, Shane M; Antonacci, Mark A; Brown, Calvin A

2018-05-07

Although both succinylcholine and rocuronium are used to facilitate emergency department (ED) rapid sequence intubation, the difference in intubation success rate between them is unknown. We compare first-pass intubation success between ED rapid sequence intubation facilitated by succinylcholine versus rocuronium. We analyzed prospectively collected data from the National Emergency Airway Registry, a multicenter registry collecting data on all intubations performed in 22 EDs. We included intubations of patients older than 14 years who received succinylcholine or rocuronium during 2016. We compared the first-pass intubation success between patients receiving succinylcholine and those receiving rocuronium. We also compared the incidence of adverse events (cardiac arrest, dental trauma, direct airway injury, dysrhythmias, epistaxis, esophageal intubation, hypotension, hypoxia, iatrogenic bleeding, laryngoscope failure, laryngospasm, lip laceration, main-stem bronchus intubation, malignant hyperthermia, medication error, pharyngeal laceration, pneumothorax, endotracheal tube cuff failure, and vomiting). We conducted subgroup analyses stratified by paralytic weight-based dose. There were 2,275 rapid sequence intubations facilitated by succinylcholine and 1,800 by rocuronium. Patients receiving succinylcholine were younger and more likely to undergo intubation with video laryngoscopy and by more experienced providers. First-pass intubation success rate was 87.0% with succinylcholine versus 87.5% with rocuronium (adjusted odds ratio 0.9; 95% confidence interval 0.6 to 1.3). The incidence of any adverse event was also comparable between these agents: 14.7% for succinylcholine versus 14.8% for rocuronium (adjusted odds ratio 1.1; 95% confidence interval 0.9 to 1.3). We observed similar results when they were stratified by paralytic weight-based dose. In this large observational series, we did not detect an association between paralytic choice and first-pass rapid sequence

TREatment of ATopic eczema (TREAT) Registry Taskforce: protocol for an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema registries.

PubMed

Gerbens, Louise A A; Boyce, Aaron E; Wall, Dmitri; Barbarot, Sebastien; de Booij, Richard J; Deleuran, Mette; Middelkamp-Hup, Maritza A; Roberts, Amanda; Vestergaard, Christian; Weidinger, Stephan; Apfelbacher, Christian J; Irvine, Alan D; Schmitt, Jochen; Williamson, Paula R; Spuls, Phyllis I; Flohr, Carsten

2017-02-27

Patients with moderate-to-severe atopic eczema (AE) often require photo- or systemic immunomodulatory therapies to induce disease remission and maintain long-term control. The current evidence to guide clinical management is small, despite the frequent and often off-label use of these treatments. Registries of patients on photo- and systemic immunomodulatory therapies could fill this gap, and the collection of a core set concerning these therapies in AE will allow direct comparisons across registries as well as data sharing and pooling. Using an eDelphi approach, the international TREatment of ATopic eczema (TREAT) Registry Taskforce aims to seek consensus between key stakeholders internationally on a core set of domains and domain items for AE patient registries with a research focus that collect data of children and adults on photo- and systemic immunomodulatory therapies. Participants from six stakeholder groups will be invited: doctors, nurses, non-clinical researchers, patients, as well as industry and regulatory body representatives. The eDelphi will comprise three sequential online rounds, requesting participants to rate the importance of each proposed domain and domain items. Participants will be able to add domains and domain items to the proposed list in round 1. A final consensus meeting will be held with representatives of each stakeholder group. Identifying a uniform core set of domains and domain items to be captured by AE patient registries will increase the utility of individual registries, and provide greater insight into the effectiveness, safety and cost-effectiveness of photo- and systemic immunomodulatory therapies to guide clinical management across dermatology centres and country borders. Not applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database.

Comparative effectiveness of ceramic-on-ceramic implants in stemmed hip replacement: a multinational study of six national and regional registries.

PubMed

Sedrakyan, Art; Graves, Stephen; Bordini, Barbara; Pons, Miquel; Havelin, Leif; Mehle, Susan; Paxton, Elizabeth; Barber, Thomas; Cafri, Guy

2014-12-17

The rapid decline in use of conventional total hip replacement with a large femoral head size and a metal-on-metal bearing surface might lead to increased popularity of ceramic-on-ceramic bearings as another hard-on-hard alternative that allows implantation of a larger head. We sought to address comparative effectiveness of ceramic-on-ceramic and metal-on-HXLPE (highly cross-linked polyethylene) implants by utilizing the distributed health data network of the ICOR (International Consortium of Orthopaedic Registries), an unprecedented collaboration of national and regional registries and the U.S. FDA (Food and Drug Administration). A distributed health data network was developed by the ICOR and used in this study. The data from each registry are standardized and provided at a level of aggregation most suitable for the detailed analysis of interest. The data are combined across registries for comprehensive assessments. The ICOR coordinating center and study steering committee defined the inclusion criteria for this study as total hip arthroplasty performed without cement from 2001 to 2010 in patients forty-five to sixty-four years of age with osteoarthritis. Six national and regional registries (Kaiser Permanente and HealthEast in the U.S., Emilia-Romagna region in Italy, Catalan region in Spain, Norway, and Australia) participated in this study. Multivariate meta-analysis was performed with use of linear mixed models, with survival probability as the unit of analysis. We present the results of the fixed-effects model and include the results of the random-effects model in an appendix. SAS version 9.2 was used for all analyses. We first compared femoral head sizes of >28 mm and ≤28 mm within ceramic-on-ceramic implants and then compared ceramic-on-ceramic with metal-on-HXLPE. A total of 34,985 patients were included; 52% were female. We found a lower risk of revision associated with use of ceramic-on-ceramic implants when a larger head size was used (HR [hazard

[The year 2003 National Registry of Home-based Parenteral Nutrition].

PubMed

Moreno, J M; Planas, M; de Cos, A I; Virgili, N; Gómez-Enterría, P; Ordóñez, J; de la Cuerda, C; Martí, E; Apezetxea, A; Forga, M T; Pérez de la Cruz, A; Muñoz, A; Rodríguez, A; Cardona, D; Pedrón, C; Luengo, L M; Garde, C; Parés, R M

2006-01-01

To report the results of the Home-based Parenteral Nutrition (HBPN) registry of the NADYA-SENPE working group, for the year 2003. Gathering of registry data introduced by all units responsible of HBPN patient care. This an on-line registry available for authorized users of the working group web page (www.nadya-senpe.com). Epidemiological data, diagnosis, access route, complications, hospital admissions, disability degree, and course at December 31st, 2003 Data from 86 patients (62% female and 38% male) from 17 hospitals were gathered. Mean age of adult patients was 50.7 +/- 15.0 years, whereas for patients younger than 14 years was 2.4 +/- 1.5 years (n = 5 patients). Diseases that prone HBPN were neoplasm (21%), followed by mesenteric ischemia (20%), radiation enteritis (16.3%), motility impairments (10.5%), and Crohn's disease (4.6%). Tunneled catheters were used in 66.3% of the cases versus 29.1% of subcutaneous reservoirs. Mean treatment duration has been 8.5 +/- 4.6 months; 67.4% of patients had been on HBPN for a period of time longer than 6 months. Patient follow-up was mostly done from the reference area hospital (88.4%). In no case patient follow-up was done by the primary care team or by specialists other than those prescribing nutritional support. Nutritional support-related complications were seen in 98 occasions. The most frequent complications were infectious ones. They represented 1.60 hospital admissions per patient. The mean number of visits was 7.9 per patient (6.4 for scheduled visits and 1.5 for emergency visits). By the end of the year, we observed that 73.3% of the patients were still on the program, whereas in 23.3% HBPN had been withdrawn. The main reasons for withdrawal were decease (11 patients), and advancing to oral diet (9 patients). As for the disability degree, 13% were confined to a wheelchair or bed, and only 28% had no disability degree or only mild social disability. We observed a mild increase in HBPN prevalence rate in Spain (2

Contemporary management of acute coronary syndromes: does the practice match the evidence? The global registry of acute coronary events (GRACE).

PubMed

Carruthers, K F; Dabbous, O H; Flather, M D; Starkey, I; Jacob, A; Macleod, D; Fox, K A A

2005-03-01

To determine to what extent evidence based guidelines are followed in the management of acute coronary syndromes (ACS) in the UK, elsewhere in Europe, and multinationally, and what the outcomes are. Multinational, prospective, observational registry (GRACE, global registry of acute coronary events) with six months' follow up. Patients presenting to a cluster of hospitals. The study was designed to collect data representative of the full spectrum of ACS in specific geographic populations. Patients admitted with a working diagnosis of unstable angina or suspected myocardial infarction (MI). Death during hospitalisation and at six months' follow up (adjusted for baseline risks). In ST elevation MI, reperfusion was applied more often in the UK (71%) than in Europe (65%) and multinationally (59%) (p < 0.01). However, this was almost entirely by lytic treatment, in contrast with elsewhere (primary percutaneous coronary intervention 1%, 29%, 16%, respectively). Statins were applied more frequently in the UK for all classes of patients with ACS (p < 0.0001). In contrast there was lower use of revascularisation procedures in non-ST MI (20% v 37% v 28%, respectively) and glycoprotein IIb/IIIa antagonists (6% v 25% v 26%, respectively). In-hospital death rates, adjusted for baseline risk, were not significantly different but six month death rates were higher in the UK for ST elevation MI (7.2% UK, 4.3% Europe, 5.3% multinationally; p < 0.0001) and non-ST elevation MI (7.5%, 6.2%, and 6.7%, respectively; p = 0.012, UK v Europe). Current management of ACS in the UK more closely follows the recommendations of the National Service Framework than British or European guidelines. Differences in practice may account for the observed higher event rates in the UK after hospital discharge.

Mapping sudden oak death risk nationally using host, climate, and pathways data

Treesearch

Frank H. Koch; William D. Smith

2008-01-01

In 2002, a team of United States Department of Agriculture-Forest Service (USDA-FS) scientists developed a preliminary risk map to serve as the foundation for an efficient, cost effective sample design for the national sudden oak death detection survey. At the time, a need to initiate rapid detection in the face of limited information on Phytophthora ramorum...

Epidemiology of pediatric primary malignant central nervous system tumors in Iran: a 10 year report of National Cancer Registry.

PubMed

Beygi, Sara; Saadat, Soheil; Jazayeri, Seyed Behzad; Rahimi-Movaghar, Vafa

2013-08-01

CNS tumors are the leading cause of cancer related deaths among children and adolescents. Nonetheless, the incidence of pediatric CNS tumors in developing countries is poorly understood. We aimed to provide epidemiologic features of primary malignant CNS tumors in Iranian children 0-19 years of age using National Cancer Registry (NCR) data bank. The data recorded by NCR over a 10 year period (2000-2010) were reviewed. Of 1948 tumor cases, 93.3% were located in brain, 5.1% were found in the spinal cord & cauda equina, and 1.6% affected cranial nerves and other parts of the nervous system. The overall average annual age specific incidence rate was 1.43 per 100,000. Males were more likely to develop CNS tumors (1.65 per 100,000) compared to females (1.21 per 100,000, p<0.01). Children under 5 years of age had the highest age specific incidence rate (1.86 per 100,000). Astrocytic tumors with the incidence rate of 0.61 per 100,000 were the most frequent specific histology followed by embryonal (0.38 per 100,000), and ependymal tumors (0.10 per 100,000). With regard to the histological distribution of tumors, some unique features including the high proportion of unspecified malignant neoplasms (7.6%) were noted. The overall incidence rate was markedly lower than western findings. Major differences were also observed in incidence rates of specific histologies. Although the discrepancies may be attributable to diversity in classification schemes and registration practices, a real ethnic and geographical variation in predisposition to development of pediatric CNS cancers is strongly suggested. Copyright © 2013 Elsevier Ltd. All rights reserved.

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.

Association between body mass index and outcomes after percutaneous coronary intervention in multiethnic South East Asian population: a retrospective analysis of the Malaysian National Cardiovascular Disease Database-Percutaneous Coronary Intervention (NCVD-PCI) registry.

PubMed

Azhari, Zaid; Ismail, Muhammad Dzafir; Zuhdi, Ahmad Syadi Mahmood; Md Sari, Norashikin; Zainal Abidin, Imran; Wan Ahmad, Wan Azman

2017-11-09

To examine the relationship between body mass index (BMI) and outcomes after percutaneous coronary intervention (PCI) in a multiethnic South East Asian population. Fifteen participating cardiology centres contributed to the Malaysian National Cardiovascular Disease Database-Percutaneous Coronary Intervention (NCVD-PCI) registry. 28 742 patients from the NCVD-PCI registry who had their first PCI between January 2007 and December 2014 were included. Those without their BMI recorded or BMI <11 kg/m 2 or >70 kg/m 2 were excluded. In-hospital death, major adverse cardiovascular events (MACEs), vascular complications between different BMI groups were examined. Multivariable-adjusted HRs for 1-year mortality after PCI among the BMI groups were also calculated. The patients were divided into four groups; underweight (BMI <18.5 kg/m 2 ), normal BMI (BMI 18.5 to <23 kg/m 2 ), overweight (BMI 23 to <27.5 kg/m 2 ) and obese (BMI ≥27.5 kg/m 2 ). Comparison of their baseline characteristics showed that the obese group was younger, had lower prevalence of smoking but higher prevalence of diabetes, hypertension and dyslipidemia. There was no difference found in terms of in-hospital death, MACE and vascular complications after PCI. Multivariable Cox proportional hazard regression analysis showed that compared with normal BMI group the underweight group had a non-significant difference (HR 1.02, p=0.952), while the overweight group had significantly lower risk of 1-year mortality (HR 0.71, p=0.005). The obese group also showed lower HR but this was non-significant (HR 0.78, p=0.056). Using Asian-specific BMI cut-off points, the overweight group in our study population was independently associated with lower risk of 1-year mortality after PCI compared with the normal BMI group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

A 25-year experience of kidney transplantation in Thailand: report from the Thai Transplant Registry.

PubMed

Noppakun, Kajohnsak; Ingsathit, Atiporn; Pongskul, Cholatip; Premasthian, Nalinee; Avihingsanon, Yingyos; Lumpaopong, Adisorn; Vareesangthip, Kriangsak; Sumethkul, Vasant

2015-03-01

To report the kidney transplant activity and survival data during the past 25 years from the Thai Transplant Registry. By using the registry database that was collected and updated yearly by 26 transplant centres across the country, we have reported the donor, recipient, and transplant characteristics during the past 25 years from 1987 to 2012. The primary outcome was graft loss that was defined as return to dialysis, graft removal, retransplant, or patient death. 465 kidney transplants were performed in 2012, an 8.1% and 23.0% increase in living and deceased donor transplants compared to the previous year, respectively. Between 1987 and 2012 with the data of 3808 recipients, patient survival and graft survival improved significantly. Traffic accident was the most common cause of death in brain-dead donors. Additionally, the most common cause of end-stage kidney disease was glomerulonephritis. Infection has been among the most common causes of death in kidney transplant recipients. We have reported the total number, the graft and the patient survival data of kidney transplant recipients in Thailand for the period from 1987 to 2012. Although the number of patients is much lower than that in the developed countries, the patients and the graft survival rates are comparable. © 2014 Asian Pacific Society of Nephrology.

National assessment of early biliary complications after liver transplantation: economic implications.

PubMed

Axelrod, David A; Dzebisashvilli, Nino; Lentine, Krista L; Xiao, Huiling; Schnitzler, Mark; Tuttle-Newhall, Janet E; Segev, Dorry L

2014-12-15

Despite improvement in surgical technique and medical management of liver transplant recipients, biliary complications remain a frequent cause of posttransplant morbidity and graft loss. Biliary complications require potentially expensive interventions including radiologic procedures and surgical revisions. A national data set linking transplant registry and Medicare claims data for 12,803 liver transplant recipients was developed to capture information on complications, treatments, and associated direct medical costs up to 3 years after transplantation. Biliary complications were more common in recipients of donation after cardiac death compared to donation after brain death allografts (23% vs. 19% P<0.001). Among donation after brain death recipients, biliary complications were associated with $54,699 (95% confidence interval [CI], $49,102 to $60,295) of incremental spending in the first year after transplantation and $7,327 in years 2 and 3 (95% CI, $4,419-$10,236). Biliary complications in donation after cardiac death recipients independently increased spending by $94,093 (95% CI, $64,643-$124,542) in the first year and $12,012 (95% CI, $-1,991 to $26,016) in years 2 and 3. This national study of biliary complications demonstrates the significant economic impact of this common perioperative complication and suggests a potential target for quality of care improvements.

Standardising trauma monitoring: the development of a minimum dataset for trauma registries in Australia and New Zealand.

PubMed

Palmer, Cameron S; Davey, Tamzyn M; Mok, Meng Tuck; McClure, Rod J; Farrow, Nathan C; Gruen, Russell L; Pollard, Cliff W

2013-06-01

Trauma registries are central to the implementation of effective trauma systems. However, differences between trauma registry datasets make comparisons between trauma systems difficult. In 2005, the collaborative Australian and New Zealand National Trauma Registry Consortium began a process to develop a bi-national minimum dataset (BMDS) for use in Australasian trauma registries. This study aims to describe the steps taken in the development and preliminary evaluation of the BMDS. A working party comprising sixteen representatives from across Australasia identified and discussed the collectability and utility of potential BMDS fields. This included evaluating existing national and international trauma registry datasets, as well as reviewing all quality indicators and audit filters in use in Australasian trauma centres. After the working party activities concluded, this process was continued by a number of interested individuals, with broader feedback sought from the Australasian trauma community on a number of occasions. Once the BMDS had reached a suitable stage of development, an email survey was conducted across Australasian trauma centres to assess whether BMDS fields met an ideal minimum standard of field collectability. The BMDS was also compared with three prominent international datasets to assess the extent of dataset overlap. Following this, the BMDS was encapsulated in a data dictionary, which was introduced in late 2010. The finalised BMDS contained 67 data fields. Forty-seven of these fields met a previously published criterion of 80% collectability across respondent trauma institutions; the majority of the remaining fields either could be collected without any change in resources, or could be calculated from other data fields in the BMDS. However, comparability with international registry datasets was poor. Only nine BMDS fields had corresponding, directly comparable fields in all the national and international-level registry datasets evaluated. A

The Portuguese Registry of Hypertrophic Cardiomyopathy: Overall results.

PubMed

Cardim, Nuno; Brito, Dulce; Rocha Lopes, Luís; Freitas, António; Araújo, Carla; Belo, Adriana; Gonçalves, Lino; Mimoso, Jorge; Olivotto, Iacopo; Elliott, Perry; Madeira, Hugo

2018-01-01

We report the results of the Portuguese Registry of Hypertrophic Cardiomyopathy, an initiative that reflects the current spectrum of cardiology centers throughout the territory of Portugal. A direct invitation to participate was sent to cardiology departments. Baseline and outcome data were collected. A total of 29 centers participated and 1042 patients were recruited. Four centers recruited 49% of the patients, of whom 59% were male, and mean age at diagnosis was 53±16 years. Hypertrophic cardiomyopathy (HCM) was identified as familial in 33%. The major reason for diagnosis was symptoms (53%). HCM was obstructive in 35% of cases and genetic testing was performed in 51%. Invasive septal reduction therapy was offered to 8% (23% of obstructive patients). Most patients (84%) had an estimated five-year risk of sudden death of <6%. Thirteen percent received an implantable cardioverter-defibrillator. After a median follow-up of 3.3 years (interquartile range [P25-P75] 1.3-6.5 years), 31% were asymptomatic. All-cause mortality was 1.19%/year and cardiovascular mortality 0.65%/year. The incidence of heart failure-related death was 0.25%/year, of sudden cardiac death 0.22%/year and of stroke-related death 0.04%/year. Heart failure-related death plus heart transplantation occurred in 0.27%/year and sudden cardiac death plus equivalents occurred in 0.53%/year. Contemporary HCM in Portugal is characterized by relatively advanced age at diagnosis, and a high proportion of invasive treatment of obstructive forms. Long-term mortality is low; heart failure is the most common cause of death followed by sudden cardiac death. However, the burden of morbidity remains considerable, emphasizing the need for disease-specific treatments that impact the natural history of the disease. Copyright © 2017 Sociedade Portuguesa de Cardiologia. Publicado por Elsevier España, S.L.U. All rights reserved.

Maternal nationality and developmental delays in young children: Analysis of the data from the national registry in Taiwan.

PubMed

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

2016-01-01

With globalization, transnational marriages become more and more common around the world. Children born to immigrant mothers might be more likely to have developmental delays, but studies on this topic are limited and with inconsistent results. To determine whether children born to immigrant mothers are more likely to have developmental delays. We analyzed the data from the national registry of children with developmental delays from 2009 to 2013 and compared the incidence of developmental delays between children born to immigrant mothers and native mothers. We also performed stratified analyses by age, sex, and geographic area. From 2009 to 2013, 78,946 new cases of developmental delays under 6 years of age were registered, including 5619 (7.1%) born to immigrant mothers. The incidence was higher in children born to native mothers in every year with rate ratios ranging from 1.32 to 1.48, and the differences reached statistical significance even after stratification by age, sex, and geographic area. Children born to immigrant mothers had lower incidence of developmental delays in Taiwan. The result may help reduce the discrimination of foreign spouses and their children. Copyright © 2016 Elsevier Ltd. All rights reserved.

Dual- vs. single-chamber defibrillators for primary prevention of sudden cardiac death: long-term follow-up of the Défibrillateur Automatique Implantable-Prévention Primaire registry.

PubMed

Defaye, Pascal; Boveda, Serge; Klug, Didier; Beganton, Frankie; Piot, Olivier; Narayanan, Kumar; Périer, Marie-Cécile; Gras, Daniel; Fauchier, Laurent; Bordachar, Pierre; Algalarrondo, Vincent; Babuty, Dominique; Deharo, Jean-Claude; Leclercq, Christophe; Marijon, Eloi; Sadoul, Nicolas

2017-09-01

Implantable cardioverter defibrillators (ICDs) are an effective primary prevention of sudden cardiac death. We examined whether dual-chamber (DC) ICDs confer a greater benefit than single-chamber (SC) ICDs, and compared the long-term outcomes of recipients of each type of device implanted for primary prevention. Between 2002 and 2012, the DAI-PP registry consecutively enrolled 1258 SC- and 1280 DC-ICD recipients at 12 French medical centres. The devices were interrogated at 4- to 6-month intervals during outpatient visits, with a focus on the therapies delivered. The study endpoints were incidence of appropriate therapies, ICD-related morbidity, and deaths from all and from specific causes. The mean age of the SC- and DC-ICD recipients was 59 ± 12 and 62 ± 11 years, respectively (P< 0.0001). The distribution of genders, New York Heart Association functional classes and glomerular filtration rates, and the rates of ischaemic vs. dilated cardiomyopathies and of defibrillation tests at implant, were similar in both study groups. The rates of periprocedural complications were 12.1% in the DC- vs. 8.8% in the SC-ICD groups (P= 0.008). Over a mean follow-up of 3.1 ± 2.2 years, pulse generators were replaced in 21.9% of the DC- vs. 13.6% of the SC-ICD group (P< 0.0001). The proportions of patients treated with ≥1 appropriate therapies (24.7 vs. 23.8%) and ≥1 inappropriate shocks (8.4 vs. 7.8%), and all-cause mortality (12.4 vs. 13.2%) were similar in both groups. In this large registry of ICD implanted for primary prevention, DC-ICDs were associated with higher rates of peri-implant complications and generator replacements, whereas the survival and rates of inappropriate shocks were similar in both groups. NCT#01992458. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2017. For permissions please email: journals.permissions@oup.com.

The first report of a 5-year period cancer registry in Greece (2009-2013): a pathology-based cancer registry.

PubMed

Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

2018-04-01

Cancer registries are essential in health care, since they allow more accurate planning of necessary health services and evaluation of programs for cancer prevention and control. The Hellenic Society of Pathology (HSP) having recognized the lack of such information in Greece has undertaken the task of a 5-year pathology-based cancer registry in Greece (2009-2013). In this study, > 95% of all pathology laboratories in the national health system hospitals and 100% of pathology laboratories in private hospitals, as well as > 80% of private pathology laboratories have contributed their data. The most common cancer types overall were as follows: breast cancer (18.26%), colorectal cancer (15.49%), prostate cancer (13.49%), and lung cancer (10.24% of all registered cancers). In men, the most common neoplasms were as follows: prostate cancer, colorectal cancer, lung cancer, and gastric cancer. In women, the most common neoplasms were as follows: breast cancer, colorectal cancer, thyroid cancer, and lung cancer. The data on cancer burden in Greece, presented herein, fill the void of cancer information in Greece that affects health care not only nationally but Europe-wise.

Low/No Calorie Sweetened Beverage Consumption in the National Weight Control Registry

PubMed Central

Catenacci, Victoria A.; Pan, Zhaoxing; Thomas, J. Graham; Ogden, Lorraine G.; Roberts, Susan A.; Wyatt, Holly R.; Wing, Rena R.; Hill, James O.

2015-01-01

Objective The aim of this cross-sectional study was to evaluate prevalence of and strategies behind low/no calorie sweetened beverage (LNCSB) consumption in successful weight loss maintainers. Methods An online survey was administered to 434 members of the National Weight Control Registry (NWCR, individuals who have lost ≥13.6 kg and maintained weight loss for > 1 year). Results While few participants (10%) consume sugar-sweetened beverages on a regular basis, 53% regularly consume LNCSB. The top five reasons for choosing LNCSB were for taste (54%), to satisfy thirst (40%), part of routine (27%), to reduce calories (22%) and to go with meals (21%). The majority who consume LNCSB (78%) felt they helped control total calorie intake. Many participants considered changing patterns of beverage consumption to be very important in weight loss (42%) and maintenance (40%). Increasing water was by far the most common strategy, followed by reducing regular calorie beverages. Conclusions Regular consumption of LNCSB is common in successful weight loss maintainers for various reasons including helping individuals to limit total energy intake. Changing beverage consumption patterns was felt to be very important for weight loss and maintenance by a substantial percentage of successful weight loss maintainers in the NWCR. PMID:25044563

Low/no calorie sweetened beverage consumption in the National Weight Control Registry.

PubMed

Catenacci, Victoria A; Pan, Zhaoxing; Thomas, J Graham; Ogden, Lorraine G; Roberts, Susan A; Wyatt, Holly R; Wing, Rena R; Hill, James O

2014-10-01

The aim of this cross-sectional study was to evaluate prevalence of and strategies behind low/no calorie sweetened beverage (LNCSB) consumption in successful weight loss maintainers. An online survey was administered to 434 members of the National Weight Control Registry (NWCR, individuals who have lost ≥13.6 kg and maintained weight loss for > 1 year). While few participants (10%) consume sugar-sweetened beverages on a regular basis, 53% regularly consume LNCSB. The top five reasons for choosing LNCSB were for taste (54%), to satisfy thirst (40%), part of routine (27%), to reduce calories (22%) and to go with meals (21%). The majority who consume LNCSB (78%) felt they helped control total calorie intake. Many participants considered changing patterns of beverage consumption to be very important in weight loss (42%) and maintenance (40%). Increasing water was by far the most common strategy, followed by reducing regular calorie beverages. Regular consumption of LNCSB is common in successful weight loss maintainers for various reasons including helping individuals to limit total energy intake. Changing beverage consumption patterns was felt to be very important for weight loss and maintenance by a substantial percentage of successful weight loss maintainers in the NWCR. Copyright © 2014 The Obesity Society.

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.

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.

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

One in Five Maternal Deaths in Bangladesh Associated with Acute Jaundice: Results from a National Maternal Mortality Survey

PubMed Central

Shah, Rupal; Nahar, Quamrun; Gurley, Emily S.

2016-01-01

We estimated the proportion of maternal deaths in Bangladesh associated with acute onset of jaundice. We used verbal autopsy data from a nationally representative maternal mortality survey to calculate the proportion of maternal deaths associated with jaundice and compared it to previously published estimates. Of all maternal deaths between 2008 and 2010, 23% were associated with jaundice, compared with 19% from 1998 to 2001. Approximately one of five maternal deaths was preceded by jaundice, unchanged in 10 years. Our findings highlight the need to better understand the etiology of these maternal deaths in Bangladesh. PMID:26755563

One in Five Maternal Deaths in Bangladesh Associated with Acute Jaundice: Results from a National Maternal Mortality Survey.

PubMed

Shah, Rupal; Nahar, Quamrun; Gurley, Emily S

2016-03-01

We estimated the proportion of maternal deaths in Bangladesh associated with acute onset of jaundice. We used verbal autopsy data from a nationally representative maternal mortality survey to calculate the proportion of maternal deaths associated with jaundice and compared it to previously published estimates. Of all maternal deaths between 2008 and 2010, 23% were associated with jaundice, compared with 19% from 1998 to 2001. Approximately one of five maternal deaths was preceded by jaundice, unchanged in 10 years. Our findings highlight the need to better understand the etiology of these maternal deaths in Bangladesh. © The American Society of Tropical Medicine and Hygiene.

Cluster analysis of the national weight control registry to identify distinct subgroups maintaining successful weight loss.

PubMed

Ogden, Lorraine G; Stroebele, Nanette; Wyatt, Holly R; Catenacci, Victoria A; Peters, John C; Stuht, Jennifer; Wing, Rena R; Hill, James O

2012-10-01

The National Weight Control Registry (NWCR) is the largest ongoing study of individuals successful at maintaining weight loss; the registry enrolls individuals maintaining a weight loss of at least 13.6 kg (30 lb) for a minimum of 1 year. The current report uses multivariate latent class cluster analysis to identify unique clusters of individuals within the NWCR that have distinct experiences, strategies, and attitudes with respect to weight loss and weight loss maintenance. The cluster analysis considers weight and health history, weight control behaviors and strategies, effort and satisfaction with maintaining weight, and psychological and demographic characteristics. The analysis includes 2,228 participants enrolled between 1998 and 2002. Cluster 1 (50.5%) represents a weight-stable, healthy, exercise conscious group who are very satisfied with their current weight. Cluster 2 (26.9%) has continuously struggled with weight since childhood; they rely on the greatest number of resources and strategies to lose and maintain weight, and report higher levels of stress and depression. Cluster 3 (12.7%) represents a group successful at weight reduction on the first attempt; they were least likely to be overweight as children, are maintaining the longest duration of weight loss, and report the least difficulty maintaining weight. Cluster 4 (9.9%) represents a group less likely to use exercise to control weight; they tend to be older, eat fewer meals, and report more health problems. Further exploration of the unique characteristics of these clusters could be useful for tailoring future weight loss and weight maintenance programs to the specific characteristics of an individual.

Developing the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a collaborative pan-stakeholder critical path registry model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

PubMed

Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Kowey, Peter; Hammill, Stephen C; Ellenbogen, Kenneth A; Marinac-Dabic, Danica; Waldo, Albert L; Brindis, Ralph G; Wilbur, David J; Jackman, Warren M; Yaross, Marcia S; Russo, Andrea M; Prystowsky, Eric; Varosy, Paul D; Gross, Thomas; Pinnow, Ellen; Turakhia, Mintu P; Krucoff, Mitchell W

2010-10-01

Although several randomized clinical trials have demonstrated the safety and efficacy of catheter ablation of atrial fibrillation (AF) in experienced centers, the outcomes of this procedure in routine clinical practice and in patients with persistent and long-standing persistent AF remain uncertain. Brisk adoption of this therapy by physicians with diverse training and experience highlights potential concerns regarding the safety and effectiveness of this procedure. Some of these concerns could be addressed by a national registry of AF ablation procedures such as the Safety of Atrial Fibrillation Ablation Registry Initiative that was initially proposed at a Cardiac Safety Research Consortium Think Tank meeting in April 2009. In January 2010, the Cardiac Safety Research Consortium, in collaboration with the Duke Clinical Research Institute, the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, held a follow-up meeting of experts in the field to review the construct and progress to date. Other participants included the National Heart, Lung, and Blood Institute; the Centers for Medicare and Medicaid Services; the Agency for Healthcare Research and Quality; the AdvaMed AF working group; and additional industry representatives. This article summarizes the discussions that occurred at the meeting of the state of the Safety of Atrial Fibrillation Ablation Registry Initiative, the identification of a clear pathway for its implementation, and the exploration of solutions to potential issues in the execution of this registry. Copyright © 2010 Mosby, Inc. All rights reserved.

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/

Risk factors of suicide mortality among multiple attempters: A national registry study in Taiwan.

PubMed

Chen, I-Ming; Liao, Shih-Cheng; Lee, Ming-Been; Wu, Chia-Yi; Lin, Po-Hsien; Chen, Wei J

2016-05-01

Little is known about the risk factors of suicide mortality among multiple attempters. This study aims to investigate the predictors of suicidal mortality in a prospective cohort of attempters in Taiwan, focusing on the time interval and suicide method change between the last two nonfatal attempts. The representative data retrieved from the National Suicide Surveillance System (NSSS) was linked with National Mortality Database to identify the causes of death in multiple attempters during 2006-2008. Cox-proportional hazard models were applied to calculate the hazard ratios for the predictors of suicide. Among the 55,560 attempters, 6485 (11.7%) had survived attempts ranging from one to 11 times; 861 (1.5%) eventually died by suicide. Multiple attempters were characterized by female (OR = 1.56, p < 0.0001), nonrecipient of national aftercare service (OR = 1.62, p < 0.0001), and current contact with mental health services (OR = 3.17, p < 0.0001). Most multiple attempters who survived from hanging (68.1%) and gas poisoning (61.9%) chose the same method in the following fatal episode. Predictors of suicidal death were identified as male, older age (≥ 45 years), shorter interval and not maintaining methods of low lethality in the last two nonfatal attempts. Receipt of nationwide aftercare was associated with lower risk of suicide but the effect was insignificant. The time interval of the last two nonfatal attempts and alteration in the lethality of suicide method were significant factors for completed suicide. Risk assessment involving these two factors may be necessary for multiple attempters in different clinical settings. Effective strategies for suicide prevention emphasizing this high risk population should be developed in the future. Copyright © 2015. Published by Elsevier B.V.

Risk of hospitalisation and death due to bone fractures after breast cancer: a registry-based cohort study.

PubMed

Colzani, Edoardo; Clements, Mark; Johansson, Anna L V; Liljegren, Annelie; He, Wei; Brand, Judith; Adolfsson, Jan; Fornander, Tommy; Hall, Per; Czene, Kamila

2016-11-22

Bone fractures may have an impact on prognosis of breast cancer. The long-term risks of bone fracture in breast cancer patients have not been thoroughly studied. Poisson regression was used to investigate the incidence of hospitalisation due to bone fracture comparing women with and without breast cancer based on Swedish National registers. Cox regression was used to investigate the risk of being hospitalised with bone fracture, and subsequent risk of death, in a regional cohort of breast cancer patients. For breast cancer patients, the 5-year risk of bone fracture hospitalisation was 4.8% and the 30-day risk of death following a bone fracture hospitalisation was 2.0%. Compared with the general population, breast cancer patients had incidence rate ratios of 1.25 (95% CI: 1.23-1.28) and 1.18 (95% CI: 1.14-1.22) for hospitalisation due to any bone fracture and hip fracture, respectively. These ratios remained significantly increased for 10 years. Comorbidities (Charlson Comorbidity Index ⩾1) were associated with the risk of being hospitalised with bone fracture. Women taking aromatase inhibitors were at an increased risk as compared with women taking tamoxifen (HR=1.48; 95% CI: 0.98-2.22). Breast cancer patients hospitalised for a bone fracture showed a higher risk of death (HR=1.83; 95% CI: 1.50-2.22) compared with those without bone fracture. Women with a previous breast cancer diagnosis are at an increased risk of hospitalisation due to a bone fracture, particularly if they have other comorbidities.

Experience of Sibling Death in Childhood and Risk of Death in Adulthood: A National Cohort Study From Sweden.

PubMed

Rostila, Mikael; Berg, Lisa; Saarela, Jan; Kawachi, Ichiro; Hjern, Anders

2017-06-15

Although there is some evidence of an association between loss of a sibling in adulthood and subsequent mortality, there have been no previous studies in which investigators have examined whether the death of a sibling in childhood is associated with adult mortality using total population data. Data on a national cohort born in Sweden in 1973-1982 (n = 717,723) were prospectively collected from the Cause of Death Register until 2013 (i.e., from the ages of 18 years to 31-40 years). Cox proportional hazards models were used to analyze the association between sibling loss during childhood and death in young adulthood. After adjustment for sociodemographic confounders and parental psychosocial covariates, the hazard ratio for all-cause mortality in bereaved siblings versus nonbereaved siblings was 1.39 (95% confidence interval: 1.14, 1.69). Risks were more pronounced for those who lost a noninfant sibling (i.e., >1 year of age) (hazard ratio = 1.53, 95% confidence interval: 1.18, 1.95) and those who lost a sibling in adolescence (i.e., between the ages of 12 and 18 years) (hazard ratio = 1.71, 95% confidence interval: 1.24, 2.35). Excess mortality risk was found for concordant causes of death (i.e., siblings dying from the same causes) but not for discordant causes. © 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.

A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

PubMed

Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

2017-08-01

Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

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.

Meta-analysis of individual registry results enhances international registry collaboration.

PubMed

Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

2018-03-28

Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

A League Table of Child Deaths by Injury in Rich Nations. Innocenti Report Card, Issue No. 2.

ERIC Educational Resources Information Center

Adamson, Peter; Micklewright, John; Wright, Anna

Noting that injuries are the leading cause of child death in all the world's more developed countries, this report is the second in a series of "Innocenti Report Cards" designed to monitor the performance of industrialized nations in meeting the needs of their children. The report focuses on child death by injury in the member countries…

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

The Three Mile Island Population Registry.

PubMed

Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

1983-01-01

Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health.

The Three Mile Island Population Registry.

PubMed Central

Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

1983-01-01

Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health. PMID:6419276

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.

Incidence and survival of children with central nervous system primitive tumors in the French National Registry of Childhood Solid Tumors.

PubMed

Desandes, Emmanuel; Guissou, Sandra; Chastagner, Pascal; Lacour, Brigitte

2014-07-01

Central nervous system (CNS) tumors are the second most common childhood malignancy. The French National Registry of Childhood Solid Tumors (NRCST) makes it possible to describe this variety of distinct tumor types and to provide incidence and survival data in France on a nationwide basis. All children aged 0-14 years, who were registered with a primary CNS tumor in the NRCST of France between 2000 and 2008, were identified. Tumors were classified according to the International Classification of Childhood Cancer, third edition. Approximately 57% of pediatric CNS tumors were gliomas, with astrocytomas of the pilocytic type predominating. Distributions of subtypes by age showed that primitive neuroectodermal tumors and ependymomas mainly occurred in children aged <5 years. The mean annual incidence rate of CNS tumors was 39 per million. No statistically significant change in time trends of incidence rate was observed during 2000-2008. For all tumors combined, overall survival was 84.8% (95% CI, 83.7%-85.9%) at 1 year and 72.9% (95% CI, 71.5%-74.3%) at 5 years. Survival time trends were studied in a multivariate analysis observing a reduction in the risk of death in periods of diagnosis 2003-2005 (HR = 0.8; 95% CI, 0.7–0.9) and 2006-2008 (HR = 0.7; 95% CI, 0.6-0.9) compared with 2000-2002. The stable incidence rates during the last 10 years could indicate that major changes in environmental risk factors are unlikely, but the ongoing need for population-based surveillance remains relevant. Results indicate a positive trend in the survival probability still persistent in the 2000s.

[Clinical trials registry].

PubMed

Ryder, Elena

2004-12-01

Authors and journals are more enthusiastic about the publication of trials with positive results than those negative or inconclusive trials. The International Committee of Medical Journal Editors proposed comprehensive trials registration as a solution to the problem of selective awareness and announces that the ICMJE member journals will adopt a trial-registration policy to promote this goal. They establish as a condition of consideration for publication, registration in a public trials registry. They recommend registries that meet certain criteria as www.clinicaltrials.com. Among those criteria is that the registry must be supported by a non-profit organization. On the other hand, people from Current Controlled Trials Ltd. being a commercial company, but meeting all the other criteria established by the ICMJE, feel that is being put aside. We wonder if clinical trials in our country are being registered in some of these International Registries. If not, would it be time to do so?

eRegistries: governance for electronic maternal and child health registries.

PubMed

Myhre, Sonja L; Kaye, Jane; Bygrave, Lee A; Aanestad, Margunn; Ghanem, Buthaina; Mechael, Patricia; Frøen, J Frederik

2016-09-23

The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries. This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues. According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards. Addressing legal requirements and ensuring that privacy and data security

Registry data for cross-country comparisons of migrants' healthcare utilization in the EU: a survey study of availability and content

PubMed Central

2009-01-01

Background Cross-national comparable data on migrants' use of healthcare services are important to address problems in access to healthcare; to identify high risk groups for prevention efforts; and to evaluate healthcare systems comparatively. Some of the main obstacles limiting analyses of health care utilization are lack of sufficient coverage and availability of reliable and valid healthcare data which includes information allowing for identification of migrants. The objective of this paper was to reveal which registry data on healthcare utilization were available in the EU countries in which migrants can be identified; and to determine to what extent data were comparable between the EU countries. Methods A questionnaire survey on availability of healthcare utilization registries in which migrants can be identified was carried out among all national statistic agencies and other relevant national health authorities in the 27 EU countries in 2008-9 as part of the Migrant and Ethnic Minority Health Observatory-project (MEHO). The information received was compared with information from a general survey on availability of survey and registry data on migrants conducted by Agency of Public Health, Lazio Region, Italy within the MEHO-project; thus, the information on registries was double-checked to assure accuracy and verification. Results Available registry data on healthcare utilization which allow for identification on migrants on a national/regional basis were only reported in 11 EU countries: Austria, Belgium, Denmark, Finland, Greece, Italy, Luxembourg, the Netherlands, Poland, Slovenia, and Sweden. Data on hospital care, including surgical procedures, were most frequently available whereas only few countries had data on care outside the hospital. Regarding identification of migrants, five countries reported having information on both citizenship and country of birth, one reported availability of information on country of birth, and five countries reported

On the feasibility of linking census samples to the National Death Index for epidemiologic studies: a progress report.

PubMed Central

Rogot, E; Feinleib, M; Ockay, K A; Schwartz, S H; Bilgrad, R; Patterson, J E

1983-01-01

To test the feasibility of using large national probability samples provided by the US Census Bureau, a pilot project was initiated to link 230,000 Census-type records to the National Death Index (NDI). Using strict precautions to maintain the complete confidentiality of individual records, the Current Population Survey files of one month in 1973 and one month in 1978 were matched by computer to the 1979 NDI file. The basic question to be addressed was whether deaths so obtained are seriously underestimated when there is no Social Security Number (SSN) in the Census record. The search of the NDI file resulted in 5,542 matches of which about 1,800 appear to be "true positives" representing deaths, the remainder are "false positives." Of the deaths, 80 per cent would still have been detected without SSN in the Census record. The main reasons for missing deaths (false negatives) were discrepancies in the year of birth and in the given name. Assuming certain changes in the NDI matching algorithm, the 80 per cent figure could increase to 85 per cent or higher; however, this could also cause significant increases in the number of false positives. The National Heart, Lung and Blood Institute (NHLBI) and Census Bureau staff are currently developing a probabilistic method to eliminate false positives from the NDI output tape. The results of the pilot study indicate that a larger research project is clearly feasible. PMID:6625029

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

Risk of cardiovascular events and death in the life after aneurysmal subarachnoid haemorrhage: a nationwide study.

PubMed

Nieuwkamp, Dennis J; Vaartjes, Ilonca; Algra, Ale; Rinkel, Gabriel J E; Bots, Michiel L

2014-12-01

The increased mortality rates of survivors of aneurysmal subarachnoid haemorrhage have been attributed to an increased risk of cardiovascular events in a registry study in Sweden. Swedish registries have however not been validated for subarachnoid haemorrhage and Scandinavian incidences of cardiovascular disease differ from that in Western European countries. We assessed risks of vascular disease and death in subarachnoid haemorrhage survivors in the Netherlands. From the Dutch hospital discharge register, we identified all patients with subarachnoid haemorrhage admission between 1997 and 2008. We determined the accuracy of coding of the diagnosis subarachnoid haemorrhage for patients admitted to our centre. Conditional on survival of three-months after the subarachnoid haemorrhage, we calculated standardized incidence and mortality ratios for fatal or nonfatal vascular diseases, vascular death, and all-cause death. Cumulative risks were estimated with survival analysis. The diagnosis of nontraumatic subarachnoid haemorrhage was correct in 95·4% of 1472 patients. Of 11,263 admitted subarachnoid haemorrhage patients, 6999 survived more than three-months. During follow-up (mean 5·1 years), 874 (12·5%) died. The risks of death were 3·3% within one-year, 11·3% within five-years, and 21·5% within 10 years. The standardized mortality ratio was 3·4 (95% confidence interval: 3·1 to 3·7) for vascular death and 2·2 (95% confidence interval: 2·1 to 2·3) for all-cause death. The standardized incidence ratio for fatal or nonfatal vascular diseases was 2·7 (95% confidence interval: 2·6 to 2·8). Dutch hospital discharge and cause of death registries are a valid source of data for subarachnoid haemorrhage, and show that the increased mortality rate in subarachnoid haemorrhage survivors is explained by increased risks for vascular diseases and death. © 2012 The Authors. International Journal of Stroke © 2012 World Stroke Organization.

Causes of death in people with liver cirrhosis in England compared with the general population: a population-based cohort study.

PubMed

Ratib, Sonia; Fleming, Kate M; Crooks, Colin J; Walker, Alex J; West, Joe

2015-08-01

There is a need for unbiased estimates of cause-specific mortality by etiology in patients with liver cirrhosis. The aim of this study is to use nationwide linked electronic routine healthcare data from primary and secondary care alongside the national death registry data to report such estimates. We identified from the linked Clinical Practice Research Datalink (CPRD) and English Hospital Episode Statistics adults with an incident diagnosis of liver cirrhosis linked to the Office for National Statistics between 1998 and 2009. Age-matched controls from the CPRD general population were selected. We calculated the cumulative incidence (adjusting for competing risks) and excess risk of death by 5 years from diagnosis for different causes of death, stratified by etiology and stage of disease. Five thousand one hundred and eighteen patients with cirrhosis were matched to 152,903 controls. Among compensated patients, the 5-year excess risk of liver-related death was higher than that of any other cause of death for all patients, except those of unspecified etiology. For example, those of alcohol etiology had 30.8% excess risk of liver-related death (95% confidence interval (CI): 27.9%, 33.1%) compared with 9.9% excess risk of non-liver-related death. However, patients of unspecified etiology had a higher excess risk of non-liver-related compared with liver-related death (10.7% vs. 6.7%). This was due to a high excess risk of non-liver neoplasm death (7.7%, 95% CI: 5.9%, 9.5%). All decompensated patients had a higher excess of liver-related mortality than any other cause. In order to reduce associated mortality among people with liver cirrhosis, patients' care pathways need to be tailored depending on the etiology and stage of the disease.

Hypoglycaemia, chronic kidney disease and death in type 2 diabetes: the Hong Kong diabetes registry

PubMed Central

2014-01-01

Background In patients with type 2 diabetes, chronic kidney disease (CKD) is associated with increased risk of hypoglycaemia and death. Yet, it remains uncertain whether hypoglycaemia-associated mortality is modified by CKD. Methods Type 2 diabetic patients, with or without CKD at enrolment were observed between 1995 and 2007, and followed up till 2009 at hospital medical clinics. We used additive interaction, estimated by relative excess risk due to interaction (RERI) and attributable proportion due to interaction (AP) to examine possible synergistic effects between CKD and severe hypoglycaemia (defined as hospitalisations due to hypoglycaemia in the 12 months prior to enrolment) on the risk of death. Results In this cohort of 8,767 type 2 diabetic patients [median age: 58 (interquartile range: 48 to 68) years; disease duration: 5 (1 to 11) years, men: 47.0%], 1,070 (12.2%) had died during a median follow-up period of 6.66 years (3.42-10.36) with 60,379 person-years.Upon enrolment, 209 patients had severe hypoglycaemia and 194 developed severe hypoglycaemia during follow-up (15 patients had both). In multivariable analysis and using patients without severe hypoglycaemia nor CKD as the referent group (683 deaths in 7,598 patients), severe hypoglycaemia alone (61 deaths in 272 patients) or CKD alone (267 death in 781 patients) were associated with increased risk of death [Hazard ratio, HR: 1.81(95%CI: 1.38 to 2.37) and 1.63 (1.38 to 1.93) respectively]. Having both risk factors (59 deaths in 116 patients) greatly enhanced the HR of death to 3.91 (2.93 to 5.21) with significant interaction (RERI: 1.46 and AP: 0.37, both p-values < 0.05). Conclusions Severe hypoglycaemia and CKD interact to increase risk of death in type 2 diabetes patients. PMID:24927961

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.

Seventeen years' experience of peritoneal dialysis in Iran: first official report of the Iranian peritoneal dialysis registry.

PubMed

Najafi, Iraj; Alatab, Sudabeh; Atabak, Shahnaz; Majelan, Nader Nouri; Sanadgol, Houshang; Makhdoomi, Khadijeh; Ardalan, Mohammad Reza; Azmandian, Jalal; Shojaee, Abbas; Keshvari, Amir; Hosseini, Mostafa

2014-01-01

To facilitate planning, national renal registries provide reliable and up-to-date information on numbers of patients with end-stage renal disease (ESRD), developing trends, treatment modalities, and outcomes. To that end, the present publication represents the first official report from Iranian Peritoneal Dialysis Registry. The prevalence, demographics, and clinical characteristics of patients on peritoneal dialysis (PD) were collected from all PD centers throughout the country. By the end of 2009, the prevalence of ESRD was 507 per million population in Iran. The most common renal replacement modality was hemodialysis (51.2%), followed by kidney transplantation (44.7%), and then PD (4.1%). The mean age of PD patients was 46 years, and the most common causes of ESRD were diabetes (33.5%), hypertension (24.4%), and glomerulonephritis (8.2%). Overall patient mortality was 25%, with cardiac events (46%), cerebral stroke (10%), and infection (8%) being the main causes of death. The 1-, 3-, and 5-year survivals were 89%, 64%, and 49% respectively. The most common cause of dropout was peritonitis (17.6%). Staphylococcus (coagulase-negative and S. aureus) was the most prevalent causative organism in peritonitis episodes; however, in more than 50% of episodes, a sterile culture was reported. Mean baseline serum hemoglobin and albumin were 10.7 g/dL and 3.6 g/dL respectively. Our registry results, representing the second largest report of PD in the Middle East, is almost comparable to available regional data. We hope that, in future, we can improve our shortcomings and lessen the gap with developed countries. Copyright © 2014 International Society for Peritoneal Dialysis.

Establishment of the Pediatric Obesity Weight Evaluation Registry: A National Research Collaborative for Identifying the Optimal Assessment and Treatment of Pediatric Obesity.

PubMed

Kirk, Shelley; Armstrong, Sarah; King, Eileen; Trapp, Christine; Grow, Mollie; Tucker, Jared; Joseph, Madeline; Liu, Lenna; Weedn, Ashley; Sweeney, Brooke; Fox, Claudia; Fathima, Samreen; Williams, Ronald; Kim, Roy; Stratbucker, William

2017-02-01

Prospective patient registries have been successfully utilized in several disease states with a goal of improving treatment approaches through multi-institutional collaboration. The prevalence of youth with severe obesity is at a historic high in the United States, yet evidence to guide effective weight management is limited. The Pediatric Obesity Weight Evaluation Registry (POWER) was established in 2013 to identify and promote effective intervention strategies for pediatric obesity. Sites in POWER provide multicomponent pediatric weight management (PWM) care for youth with obesity and collect a defined set of demographic and clinical parameters, which they regularly submit to the POWER Data Coordinating Center. A program profile survey was completed by sites to describe characteristics of the respective PWM programs. From January 2014 through December 2015, 26 US sites were enrolled in POWER and had submitted data on 3643 youth with obesity. Ninety-five percent were 6-18 years of age, 54% female, 32% nonwhite, 32% Hispanic, and 59% publicly insured. Over two-thirds had severe obesity. All sites included a medical provider and used weight status in their referral criteria. Other program characteristics varied widely between sites. POWER is an established national registry representing a diverse sample of youth with obesity participating in multicomponent PWM programs across the United States. Using high-quality data collection and a collaborative research infrastructure, POWER aims to contribute to the development of evidence-based guidelines for multicomponent PWM programs.

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.

Premature trial discontinuation often not accurately reflected in registries: comparison of registry records with publications.

PubMed

Alturki, Reem; Schandelmaier, Stefan; Olu, Kelechi Kalu; von Niederhäusern, Belinda; Agarwal, Arnav; Frei, Roy; Bhatnagar, Neera; Hooft, Lotty; von Elm, Erik; Briel, Matthias

2017-01-01

One quarter of randomized clinical trials (RCTs) are prematurely discontinued and frequently remain unpublished. Trial registries can document whether a trial is ongoing, suspended, discontinued, or completed and therefore represent an important source for trial status information. The accuracy of this information is unclear. To examine the accuracy of completion status and reasons for discontinuation documented in trial registries as compared to corresponding publications of discontinued RCTs and to investigate potential predictors for accurate trial status information in registries. We conducted a cross-sectional study comparing information provided in publications (reference standard) to corresponding registry entries. First, we reviewed publications of RCTs providing information on both discontinuation and registration. We identified eligible publications through systematic searches of MEDLINE and EMBASE (2010-2014) and an international cohort of 1,017 RCTs initiated between 2000 and 2003. Second, pairs of investigators independently and in duplicate extracted data from publications and corresponding registry records. Third, for each discontinued RCT, we compared publication information to registry information. We used multivariable regression to examine whether accurate labeling of trials as discontinued (vs. other status) in the registry was associated with recent initiation of RCT, industry sponsorship, multicenter design, or larger sample size. We identified 173 publications of RCTs that were discontinued due to slow recruitment (55%), harm (16%), futility (11%), benefit (5%), other reasons (3%), or multiple reasons (9%). Trials were registered with clinicaltrials.gov (77%), isrctn.com (14%), or other registries (8%). Of the 173 corresponding registry records, 77 (45%) trials were labeled as discontinued and 57 (33%) provided a reason for discontinuation (of which 53, 93%, provided the same reason as in the publication). Labeling of discontinued trials as

Diagnosis and mortality in 47,XYY persons: a registry study

PubMed Central

2010-01-01

Background Sex chromosomal abnormalities are relatively common, yet many aspects of these syndromes remain unexplored. For instance epidemiological data in 47,XYY persons are still limited. Methods Using a national Danish registry, we identified 208 persons with 47,XYY or a compatible karyotype, whereof 36 were deceased; all were diagnosed from 1968 to 2008. For further analyses, we identified age matched controls from the male background population (n = 20,078) in Statistics Denmark. We report nationwide prevalence data, data regarding age at diagnosis, as well as total and cause specific mortality data in these persons. Results The average prevalence was 14.2 47,XYY persons per 100,000, which is reduced compared to the expected 98 per 100,000. Their median age at diagnosis was 17.1 years. We found a significantly decreased lifespan from 77.9 years (controls) to 67.5 years (47,XYY persons). Total mortality was significantly increased compared to controls, with a hazard ratio of 3.6 (2.6-5.1). Dividing the causes of deaths according to the International Classification of Diseases, we identified an increased hazard ratio in all informative chapters, with a significantly increased ratio in cancer, pulmonary, neurological and unspecified diseases, and trauma. Conclusion We here present national epidemiological data regarding 47,XYY syndrome, including prevalence and mortality data, showing a significantly delay to diagnosis, reduced life expectancy and an increased total and cause specific mortality. PMID:20509956

The antiretrovirals in pregnancy registry: a fifteenth anniversary celebration.

PubMed

Tilson, Hugh H; Doi, Peggy A; Covington, Deborah L; Parker, Artist; Shields, Kristine; White, Alice

2007-02-01

The year 2007 marks the fifteenth anniversary year of the founding of a landmark effort in drug safety risk management, the formation of the first monitoring effort of an antiretroviral (ARV) drug in pregnancy which has become the Antiretrovirals in Pregnancy Registry, the APR. This multicompany, multi-national voluntary collaborative registry monitors pregnancy exposure to a class of highly important drugs for any indication of an increase in the postexposure incidence of birth defects in the offspring of these pregnancies. To recognize the anniversary, the Steering Committee of the APR has commissioned this review of the contributions and lessons learned over the past decade and a half and, in the spirit of continuous process improvement, has committed to apply these lessons for the next fifteen years. This retrospective examines the antecedents to this registry and the context in which the APR was formed; the early efforts to establish technical and organizational procedures and policies; the evolving experiences with enrollment and follow-up, patient and participant protections, information management and oversight; public and regulatory dissemination; and of course, the accomplishments and lessons learned. Obstetricians & Gynecologists, Family Physicians. After completion of this article, the reader should be able to explain the value of a drug registry in determining safety risk management; summarize that the Antiretroviral (ARV) drugs in Pregnancy Registry (APR) is a very successful multinational, multicompany collaborative effort that has been in place for 15 years; and state that it has been an ideal public interest effort dealing with the devastating pandemic of human immunodeficiency viral disease.

The relationship between a less gender-stereotypical parenthood and alcohol-related care and death: A registry study of Swedish mothers and fathers

PubMed Central

Månsdotter, Anna; Backhans, Mona; Hallqvist, Johan

2008-01-01

Background In general men tend to drink more alcohol and experience more alcohol-related sickness, injuries and mortality than women. In this paper, the overall hypothesis was that increased gender similarity in the division of parental duties would lead to convergence in alcohol-related harm. The aim was to analyse whether the risk of alcohol harm differs between parents who fit a gender-stereotypical versus those with a less gender-stereotypical division of childcare and paid work. Methods The study sample was a retrospective registry-based cohort study of all Swedish couples who had their first child together in 1978 (N = 49,120). A less gender-stereotypical parenthood was indicated by paternity leave for fathers (1978–1979) and full-time work for mothers (1980). The outcome was inpatient care and/or death caused by alcohol psychosis, alcoholism, liver disease, or alcohol intoxication in the two decades following (1981–2001). Our main statistical method was multivariate logistic regression with odds ratios used to estimate relative risks. Results The main results show that fathers who took paternity leave had 18% lower risk of alcohol-related care and/or death than other fathers. Mothers who worked full-time about two years after having a child had 71% higher risk than mothers who were unemployed or worked part-time. Conclusion A less gender-stereotypical division of duties between parents in early parenthood may contribute to a long-term decreased gender disparity regarding risky alcohol consumption and alcohol-related harm. In order to know more about the causal direction however, future research has to consider subjects' drinking patterns in the years prior to parenthood. PMID:18793385

The relationship between a less gender-stereotypical parenthood and alcohol-related care and death: a registry study of Swedish mothers and fathers.

PubMed

Månsdotter, Anna; Backhans, Mona; Hallqvist, Johan

2008-09-15

In general men tend to drink more alcohol and experience more alcohol-related sickness, injuries and mortality than women. In this paper, the overall hypothesis was that increased gender similarity in the division of parental duties would lead to convergence in alcohol-related harm. The aim was to analyse whether the risk of alcohol harm differs between parents who fit a gender-stereotypical versus those with a less gender-stereotypical division of childcare and paid work. The study sample was a retrospective registry-based cohort study of all Swedish couples who had their first child together in 1978 (N = 49,120). A less gender-stereotypical parenthood was indicated by paternity leave for fathers (1978-1979) and full-time work for mothers (1980). The outcome was inpatient care and/or death caused by alcohol psychosis, alcoholism, liver disease, or alcohol intoxication in the two decades following (1981-2001). Our main statistical method was multivariate logistic regression with odds ratios used to estimate relative risks. The main results show that fathers who took paternity leave had 18% lower risk of alcohol-related care and/or death than other fathers. Mothers who worked full-time about two years after having a child had 71% higher risk than mothers who were unemployed or worked part-time. A less gender-stereotypical division of duties between parents in early parenthood may contribute to a long-term decreased gender disparity regarding risky alcohol consumption and alcohol-related harm. In order to know more about the causal direction however, future research has to consider subjects' drinking patterns in the years prior to parenthood.

[The safety of biologics : a risk-benefit assessment of treating rheumatoid arthritis with biologics based on registry data on mortality].

PubMed

Sander, O

2010-11-01

The aim of this study is a risk-benefit assessment of treating rheumatoid arthritis with biologics based on registry data on mortality.UK, Sweden and Spain have published evaluable data on mortality. A parallel control group was conducted in the UK. Sweden and Spain used an historical cohort for comparison.Central registries supported British and Swedish research by sending details on all deaths. The variety of possible confounders prevents direct comparisons of the registers and safe predictions for individual patients.The death rate in TNF-inhibitor-treated patients is higher than in the general population but lower than in the control groups with RA. Thus comorbidities are not balanced, the weighted mortality rate scaled down the difference between exposed patients and controls. When TNF-inhibitors are given for the usual indication, mortality is reduced compared to conventional therapy.

Risk of hospitalisation and death due to bone fractures after breast cancer: a registry-based cohort study

PubMed Central

Colzani, Edoardo; Clements, Mark; Johansson, Anna L V; Liljegren, Annelie; He, Wei; Brand, Judith; Adolfsson, Jan; Fornander, Tommy; Hall, Per; Czene, Kamila

2016-01-01

Background: Bone fractures may have an impact on prognosis of breast cancer. The long-term risks of bone fracture in breast cancer patients have not been thoroughly studied. Methods: Poisson regression was used to investigate the incidence of hospitalisation due to bone fracture comparing women with and without breast cancer based on Swedish National registers. Cox regression was used to investigate the risk of being hospitalised with bone fracture, and subsequent risk of death, in a regional cohort of breast cancer patients. Results: For breast cancer patients, the 5-year risk of bone fracture hospitalisation was 4.8% and the 30-day risk of death following a bone fracture hospitalisation was 2.0%. Compared with the general population, breast cancer patients had incidence rate ratios of 1.25 (95% CI: 1.23–1.28) and 1.18 (95% CI: 1.14–1.22) for hospitalisation due to any bone fracture and hip fracture, respectively. These ratios remained significantly increased for 10 years. Comorbidities (Charlson Comorbidity Index ⩾1) were associated with the risk of being hospitalised with bone fracture. Women taking aromatase inhibitors were at an increased risk as compared with women taking tamoxifen (HR=1.48; 95% CI: 0.98–2.22). Breast cancer patients hospitalised for a bone fracture showed a higher risk of death (HR=1.83; 95% CI: 1.50–2.22) compared with those without bone fracture. Conclusions: Women with a previous breast cancer diagnosis are at an increased risk of hospitalisation due to a bone fracture, particularly if they have other comorbidities. PMID:27701383

Mammal Inventory of the Mojave Network Parks-Death Valley and Joshua Tree National Parks, Lake Mead National Recreation Area, Manzanar National Historic Site, and Mojave National Preserve

USGS Publications Warehouse

Drost, Charles A.; Hart, Jan

2008-01-01

This report describes the results of a mammal inventory study of National Park Service units in the Mojave Desert Network, including Death Valley National Park, Joshua Tree National Park, Lake Mead National Recreation Area, Manzanar National Historic Site, and Mojave National Preserve. Fieldwork for the inventory focused on small mammals, primarily rodents and bats. Fieldwork for terrestrial small mammals used trapping with Sherman and Tomahawk small- and medium-sized mammal traps, along with visual surveys for diurnal species. The majority of sampling for terrestrial small mammals was carried out in 2002 and 2003. Methods used in field surveys for bats included mist-netting at tanks and other water bodies, along with acoustic surveys using Anabat. Most of the bat survey work was conducted in 2003. Because of extremely dry conditions in the first two survey years (and associated low mammal numbers), we extended field sampling into 2004, following a relatively wet winter. In addition to field sampling, we also reviewed, evaluated, and summarized museum and literature records of mammal species for all of the Park units. We documented a total of 59 mammal species as present at Death Valley National Park, with an additional five species that we consider of probable occurrence. At Joshua Tree, we also documented 50 species, and an additional four 'probable' species. At Lake Mead National Recreation Area, 57 mammal species have been positively documented, with 10 additional probable species. Manzanar National Historic Site had not been previously surveyed. We documented 19 mammal species at Manzanar, with an additional 11 probable species. Mojave National Preserve had not had a comprehensive list previously, either. There are now a total of 50 mammal species documented at Mojave, with three additional probable species. Of these totals, 23 occurrences are new at individual park units (positively documented for the first time), with most of these being at Manzanar

Study on the prevalence and neonatal lethality in patients with selected congenital anomalies as per the data of the National Registry of Congenital Anomalies of Argentina.

PubMed

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

2015-08-01

Congenital anomalies (CAs) account for 26% of infant mortality in Argentina. The lethality rate for CAs measures the risk of death among affected infants. To describe the prevalence at birth of a group of selected CAs, to estimate the neonatal lethality rate, and to examine its association with different variables. The study was conducted using data provided by the National Registry of Congenital Anomalies. Prevalences of encephalocele, spina bifida, gastroschisis, omphalocele, diaphragmatic hernia, esophageal atresia, intestinal atresia, or anorectal malformation were estimated (2009-2013 period). Lethality was assessed at 7 and 28 days of life in affected infants with an isolated anomaly (2013). Association with the following variables was analyzed: sex, gestational age, birth weight, antenatal ultrasound screening, percentage of unmet basic needs in the district where the mother lives, geographic region, and level of care at the hospital where the delivery took place. Gastroschisis was the most prevalent CA (8.53/10,000 births), while diaphragmatic hernia was the CA with the highest neonatal lethality rate (66.67%). Out of all selected CAs, there was a significant association between an higher gestational age and survival at 7 days -OR: 0.81 (0.70-0.95)- and survival at 28 days -OR: 0.79 (95% confidence interval |-CI-|: 0.68-0.91)-. A higher percentage of unmet basic needs was associated with a higher lethality for diaphragmatic hernia -OR: 1.59 (95% CI: 1.30-1.95)- and for intestinal atresia or anorectal malformation -OR: 16.00 (95% CI: 1.63-157.24)-. The high prevalence of gastroschisis is consistent with the increase observed globally. Prematurity and a high percentage of unmet basic needs increased the risk of death among affected infants.

Death by homicide in National Collegiate Athletic Association athletes between 2003 and 2013.

PubMed

Rao, Ashwin L; Poon, Steven; Drezner, Jonathan A; Zigman, Monica; Asif, Irfan M; Harmon, Kimberly G

2016-02-01

The incidence of homicide-related death among individuals of college age in the United States population is estimated at 15.5/100,000. The incidence of homicide among National Collegiate Athletic Association (NCAA) athletes is unknown. To investigate the rate of homicide-related death in NCAA athletes and to identify associated risk factors. The NCAA Resolutions list, NCAA catastrophic insurance claims, media reports, and published NCAA demographic data were used to identify student athlete deaths and total participant seasons from 2003-04 through 2012-13. Homicide-related deaths were analysed by sex, race, division, sport, method, location, and circumstance. Internet searches were used to gather case details. Forty-two cases of homicide-related death were identified from 4,242,519 individual participant seasons during the ten-year study period. The incidence of homicide-related death in NCAA athletes was 1.0/100,000. The incidence in males was 1.45/100,000 and in females was 0.4/100,000 (relative risk (RR) 2.9, p=0.01). The incidence in black athletes was 4.2/100,000 and in white athletes was 0.4/100,000 (RR 7.0, p<0.001). The highest sport-specific homicide-related death rate was in American football (3.7/100,000), with a RR of 4.4 (p=0.002) compared to all other sports. 88% of cases occurred off-campus. 38% of cases occurred at a social gathering, and 38% of cases occurred in a place of residence. 74% involved a fatal shooting. Homicide-related deaths in NCAA athletes occur most commonly in males, black athletes, and American football players. Understanding the incidence, risk factors, and circumstances of homicide-related deaths in college athletes may assist NCAA institutions in developing preventative measures. University of Washington Human Subjects Application, HSD No. 42077. 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/

Temporal trends in the leading causes of death among a large national cohort of patients with colorectal cancer from 1975 to 2009 in the United States.

PubMed

Tong, Liyue; Ahn, Chul; Symanski, Elaine; Lai, Dejian; Du, Xianglin L

2014-06-01

To assess the distribution of proportion of deaths from causes other than colorectal cancer (CRC) over time and temporal trends of cause-specific cumulative incidence of death due to six leading causes in patients with CRC. Overall, 375,462 patients with CRC in nine Surveillance, Epidemiology, and End Results registries from 1975 to 2009 were included. Competing risks proportional hazards regression was used to examine the effect of diagnostic periods on the risk of cause-specific death. From 1975 to 2009 by 5-year interval, the proportion of deaths from causes other than CRC increased significantly with diagnostic periods according to the lengths of follow-up (P < .0001). The 5-year risk of death significantly decreased with diagnostic periods for all-cause, CRC, and circulation diseases among all age groups (<65, 65-74, and ≥75 years) but increased for chronic obstructive pulmonary disease, diabetes, and Alzheimer disease among patients aged 65 years or older. Deaths due to causes other than CRC increased significantly over time regardless of tumor stage and site but more sharply in those with early-stage and distal colon cancer. The increasing leading causes of death are chronic obstructive pulmonary disease, diabetes, and Alzheimer disease, which may be prevented or delayed substantially by modification or intervention in lifestyle or other factors. Copyright © 2014 Elsevier Inc. All rights reserved.

No improvement in survival of patients with amyloidosis associated with inflammatory rheumatic diseases -- data from the Finnish national registry for kidney diseases.

PubMed

Immonen, Kai; Finne, Patrik; Hakala, Markku; Kautiainen, Hannu; Pettersson, Tom; Grönhagen-Riska, Carola

2008-07-01

To assess the incidence and outcome of renal replacement therapy (RRT) among patients with amyloidosis associated with inflammatory rheumatic diseases. Patients with amyloidosis entering RRT from 1987 to 2002 were identified from the Finnish Registry for Kidney Diseases. Five hundred two patients were identified, 80% of whom had amyloidosis associated with an underlying rheumatic disease. They were followed from the time of entering RRT until death or until the end of 2003 using the Finnish national mortality files. During the study period, there was no decline in the number of patients with amyloidosis entering RRT. Mean age of patients with rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA) increased significantly from 1987 to 2002 (p < 0.001). Male sex and a diagnosis of JIA indicated an increased risk of mortality. The median survival time after entering RRT was 2.11 years for RA (95% CI 1.93 to 2.69), 2.37 years for ankylosing spondylitis (95% CI 1.11 to 4.31), and 3.05 years for JIA (95% CI 2.19 to 4.23). The 5-year survival rates among patients with the corresponding diagnoses were 18% (95% CI 14% to 23%), 30% (95% CI 14% to 48%), and 27% (95% CI 14% to 41%), respectively. No decline was seen in the number of patients with amyloidosis associated with inflammatory rheumatic diseases accepted for RRT, but over the years, the age of patients with RA or JIA entering RRT was seen to increase. The outcome of patients with amyloidosis and endstage renal disease associated with rheumatic diseases remains poor.

Increased risk of death with congenital anomalies in the offspring of male semiconductor workers.

PubMed

Lin, Ching-Chun; Wang, Jung-Der; Hsieh, Gong-Yih; Chang, Yu-Yin; Chen, Pau-Chung

2008-01-01

Female workers in the semiconductor industry have higher risks of subfertility and spontaneous abortion, but no studies exploring male-mediated developmental toxicity have been published. This study aimed to investigate whether the offspring of male workers employed in the semiconductor manufacturing industry had an increased risk of death with congenital anomalies. The 6,834 male workers had been employed in the eight semiconductor companies in Taiwan between 1980 and 1994. We identified the live born children with or without congenital anomalies of the workers using the National Birth and Death Registries from the Department of Health, Taiwan. Multiple logistic regression models were used to estimate the odds ratios (OR) of birth outcomes and deaths, controlling for infant sex, maternal age, and paternal education. A total of 5,702 children were born to male workers during the period 1980-1994. There were increased risks of deaths with congenital anomalies (adjusted OR, 3.26; and 95% confidence interval [CI], 1.12-9.44) and heart anomalies (OR, 4.15; 95% CI, 1.08-15.95) in the offspring of male workers who were employed during the two months before conception. We found evidence of a possible link between paternal preconception exposure of semiconductor manufacturing and an increased risk of congenital anomalies, especially of the heart. The possible etiological basis needs to be corroborated in further research.

Multicenter breast cancer collaborative registry.

PubMed

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC).

Multicenter Breast Cancer Collaborative Registry

PubMed Central

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A.; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute’s Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596