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

PubMed

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

2007-07-01

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

The Australasian Diabetes Data Network: first national audit of children and adolescents with type 1 diabetes.

PubMed

Phelan, Helen; Clapin, Helen; Bruns, Loren; Cameron, Fergus J; Cotterill, Andrew M; Couper, Jennifer J; Davis, Elizabeth A; Donaghue, Kim C; Jefferies, Craig A; King, Bruce R; Sinnott, Richard O; Tham, Elaine B; Wales, Jerry K; Jones, Timothy W; Craig, Maria E

2017-02-20

To assess glycaemic control, anthropometry and insulin regimens in a national sample of Australian children and adolescents with type 1 diabetes. Cross-sectional analysis of de-identified, prospectively collected data from the Australasian Diabetes Data Network (ADDN) registry. Five paediatric diabetes centres in New South Wales, Queensland, South Australia, Victoria and Western Australia. Children and adolescents (aged 18 years or under) with type 1 diabetes of at least 12 months' duration for whom data were added to the ADDN registry during 2015. Glycaemic control was assessed by measuring haemoglobin A1c (HbA1c) levels. Body mass index standard deviation scores (BMI-SDS) were calculated according to the CDC-2000 reference; overweight and obesity were defined by International Obesity Task Force guidelines. Insulin regimens were classified as twice-daily injections (BD), multiple daily injections (MDI; at least three injection times per day), or continuous subcutaneous insulin infusion (CSII). The mean age of the 3279 participants was 12.8 years (SD, 3.7), mean diabetes duration was 5.7 years (SD, 3.7), and mean HbA1c level 67 mmol/mol (SD, 15); only 27% achieved the national HbA1c target of less than 58 mmol/mol. The mean HbA1c level was lower in children under 6 (63 mmol/mol) than in adolescents (14-18 years; 69 mmol/mol). Mean BMI-SDS for all participants was 0.6 (SD, 0.9); 33% of the participants were overweight or obese. 44% were treated with CSII, 38% with MDI, 18% with BD. Most Australian children and adolescents with type 1 diabetes are not meeting the recognised HbA1c target. The prevalence of overweight and obesity is high. There is an urgent need to identify barriers to achieving optimal glycaemic control in this population.

Electronic Patient Registries Improve Diabetes Care and Clinical Outcomes in Rural Community Health Centers

ERIC Educational Resources Information Center

Pollard, Cecil; Bailey, Kelly A.; Petitte, Trisha; Baus, Adam; Swim, Mary; Hendryx, Michael

2009-01-01

Context: Diabetes care is challenging in rural areas. Research has shown that the utilization of electronic patient registries improves care; however, improvements generally have been described in combination with other ongoing interventions. The level of basic registry utilization sufficient for positive change is unknown. Purpose: The goal of…

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

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.

[Is cancer incidence different between type 2 diabetes patients compared to non-diabetics in hemodialysis? A study from the REIN registry].

PubMed

Le Guillou, Aurélie; Pladys, Adelaide; Kihal, Wahida; Siebert, Muriel; Haddj-Elmrabet, Atman; Cernon, Charlotte; Bernard, Anne; Charasse, Christophe; Mandart, Lise; Hamel, Didier; Tanquerel, Tugdual; Strullu, Bernard; Richer, Christine; Siohan, Pascale; Sawadogo, Théophile; Baleynaud, Juliette; Baluta, Simona; Bayat, Sahar; Vigneau, Cécile

2018-05-01

In France, diabetes mellitus is now the second cause of end stage renal disease. In a large previous French national study, we observed that dialyzed diabetics have a significant lower risk of death by cancer. This first study was focused on cancer death but did not investigate cancer incidence. In this context, the aim of this second study was to compare the incidence of cancer in diabetic dialyzed patients compared to non-diabetic dialyzed patients in a French region. This epidemiologic multicentric study included 588 diabetic and non-diabetic patients starting hemodialysis between 2002 and 2007 in Bretagne. Data were issued from REIN registry and cancer incidence were individually collected from medical records. Diabetics and non-diabetics were matched one by one on age, sex and year of dialysis initiation. During the follow-up, we observed 28 cancers (9.4%) in diabetic patients and 26 cancers (8.9%) in non-diabetics patients. The cumulative incidence to develop a cancer 2 years after the dialysis start was approximately 6% in both diabetics and non-diabetics patients. In univariate Fine and Gray analysis, BMI, hemoglobin, statin use had P-value<0.2. However, in the adjusted model, these variables were not significantly associated with cancer incidence. This study lead on a little number of dialyzed patients did not show any significant difference on cancer incidence between diabetic and non-diabetic patients after hemodialysis start. Copyright © 2017 Société francophone de néphrologie, dialyse et transplantation. Published by Elsevier Masson SAS. All rights reserved.

A Web-based interactive diabetes registry for health care management and planning in Saudi Arabia.

PubMed

Al-Rubeaan, Khalid A; Youssef, Amira M; Subhani, Shazia N; Ahmad, Najlaa A; Al-Sharqawi, Ahmad H; Ibrahim, Heba M

2013-09-09

Worldwide, eHealth is a rapidly growing technology. It provides good quality health services at lower cost and increased availability. Diabetes has reached an epidemic stage in Saudi Arabia and has a medical and economic impact at a countrywide level. Data are greatly needed to better understand and plan to prevent and manage this medical problem. The Saudi National Diabetes Registry (SNDR) is an electronic medical file supported by clinical, investigational, and management data. It functions as a monitoring tool for medical, social, and cultural bases for primary and secondary prevention programs. Economic impact, in the form of direct or indirect cost, is part of the registry's scope. The registry's geographic information system (GIS) produces a variety of maps for diabetes and associated diseases. In addition to availability and distribution of health facilities in the Kingdom, GIS data provide health planners with the necessary information to make informed decisions. The electronic data bank serves as a research tool to help researchers for both prospective and retrospective studies. A Web-based interactive GIS system was designed to serve as an electronic medical file for diabetic patients retrieving data from medical files by trained registrars. Data was audited and cleaned before it was archived in the electronic filing system. It was then used to produce epidemiologic, economic, and geographic reports. A total of 84,942 patients were registered from 2000 to 2012, growing by 10% annually. The SNDR reporting system for epidemiology data gives better understanding of the disease pattern, types, and gender characteristics. Part of the reporting system is to assess quality of health care using different parameters, such as HbA1c, that gives an impression of good diabetes control for each institute. Economic reports give accurate cost estimation of different services given to diabetic patients, such as the annual insulin cost per patient for type 1, type 2, and

Association of Pulmonary Tuberculosis and Diabetes in Mexico: Analysis of the National Tuberculosis Registry 2000-2012.

PubMed

Delgado-Sánchez, Guadalupe; García-García, Lourdes; Castellanos-Joya, Martín; Cruz-Hervert, Pablo; Ferreyra-Reyes, Leticia; Ferreira-Guerrero, Elizabeth; Hernández, Andrés; Ortega-Baeza, Victor Manuel; Montero-Campos, Rogelio; Sulca, José Antonio; Martínez-Olivares, Ma de Lourdes; Mongua-Rodríguez, Norma; Baez-Saldaña, Renata; González-Roldán, Jesús Felipe; López-Gatell, Hugo; Ponce-de-León, Alfredo; Sifuentes-Osornio, José; Jiménez-Corona, María Eugenia

2015-01-01

Tuberculosis (TB) remains a public health problem in Mexico while the incidence of diabetes mellitus type 2 (DM) has increased rapidly in recent years. To describe the trends of incidence rates of pulmonary TB associated with DM and not associated with DM and to compare the results of treatment outcomes in patients with and without DM. We analysed the National Tuberculosis Registry from 2000 to 2012 including patients with pulmonary TB among individuals older than 20 years of age. The association between DM and treatment failure was analysed using logistic regression, accounting for clustering due to regional distribution. In Mexico from 2000 to 2012, the incidence rates of pulmonary TB associated to DM increased by 82.64%, (p<0.001) in contrast to rates of pulmonary TB rate without DM, which decreased by 26.77%, (p<0.001). Patients with a prior diagnosis of DM had a greater likelihood of failing treatment (adjusted odds ratio, 1.34 (1.11-1.61) p<0.002) compared with patients who did not have DM. There was statistical evidence of interaction between DM and sex. The odds of treatment failure were increased in both sexes. Our data suggest that the growing DM epidemic has an impact on the rates of pulmonary TB. In addition, patients who suffer from both diseases have a greater probability of treatment failure.

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.

Challenges in Identifying Patients with Type 2 Diabetes for Quality-Improvement Interventions in Primary Care Settings and the Importance of Valid Disease Registries.

PubMed

Wozniak, Lisa; Soprovich, Allison; Rees, Sandra; Johnson, Steven T; Majumdar, Sumit R; Johnson, Jeffrey A

2015-10-01

Patient registries are considered an important foundation of chronic disease management, and diabetes patient registries are associated with better processes and outcomes of care. The purpose of this article is to describe the development and use of registries in the Alberta's Caring for Diabetes (ABCD) project to identify and reach target populations for quality-improvement interventions in the primary care setting. We applied the reach, effectiveness, adoption, implementation and maintenance (RE-AIM) framework and expanded the definition of reach beyond the individual (i.e. patient) level to include the ability to identify target populations at an organizational level. To characterize reach and the implementation of registries, semistructured interviews were conducted with key informants, and a usual-care checklist was compiled for each participating Primary Care Network (PCN). Content analysis was used to analyze qualitative data. Using registries to identify and recruit participants for the ABCD interventions proved challenging. The quality of the registries depended on whether physicians granted PCN access to patient lists, the strategies used in development, the reliability of diagnostic information and the data elements collected. In addition, once a diabetes registry was developed, there was limited ability to update it. Proactive management of chronic diseases like diabetes requires the ability to reach targeted patients at the population level. We observed several challenges to the development and application of patient registries. Given the importance of valid registries, strong collaborations and novel strategies that involve policy-makers, PCNs and providers are needed to help find solutions to improve registry quality and resolve maintenance issues. Copyright © 2015 Canadian Diabetes Association. Published by Elsevier Inc. All rights reserved.

Japan Diabetic Nephropathy Cohort Study: study design, methods, and implementation.

PubMed

Furuichi, Kengo; Shimizu, Miho; Toyama, Tadashi; Koya, Daisuke; Koshino, Yoshitaka; Abe, Hideharu; Mori, Kiyoshi; Satoh, Hiroaki; Imanishi, Masahito; Iwano, Masayuki; Yamauchi, Hiroyuki; Kusano, Eiji; Fujimoto, Shouichi; Suzuki, Yoshiki; Okuda, Seiya; Kitagawa, Kiyoki; Iwata, Yasunori; Kaneko, Shuichi; Nishi, Shinichi; Yokoyama, Hitoshi; Ueda, Yoshihiko; Haneda, Masakazu; Makino, Hirofumi; Wada, Takashi

2013-12-01

Diabetic nephropathy, leading to end-stage renal disease, has a considerable impact on public health and the social economy. However, there are few national registries of diabetic nephropathy in Japan. The aims of this prospective cohort study are to obtain clinical data and urine samples for revising the clinical staging of diabetic nephropathy, and developing new diagnostic markers for early diabetic nephropathy. The Japanese Society of Nephrology established a nationwide, web-based, and prospective registry system. On the system, there are two basic registries; the Japan Renal Biopsy Registry (JRBR), and the Japan Kidney Disease Registry (JKDR). In addition to the two basic registries, we established a new prospective registry to the system; the Japan Diabetic Nephropathy Cohort Study (JDNCS), which collected physical and laboratory data. We analyzed the data of 321 participants (106 female, 215 male; average age 65 years) in the JDNCS. Systolic and diastolic blood pressure was 130.1 and 72.3 mmHg, respectively. Median estimated glomerular filtration rate (eGFR) was 33.3 ml/min/1.73 m(2). Proteinuria was 1.8 g/gCr, and serum levels of albumin were 3.6 g/dl. The majority of the JDNCS patients presented with preserved eGFR and low albuminuria or low eGFR and advanced proteinuria. In the JRBR and JKDR registries, 484 and 125 participants, respectively, were enrolled as having diabetes mellitus. In comparison with the JRBR and JKDR registries, the JDNCS was characterized by diabetic patients presenting with low proteinuria with moderately preserved eGFR. There are few national registries of diabetic nephropathy to evaluate prognosis in Japan. Future analysis of the JDNCS will provide clinical insights into the epidemiology and renal and cardiovascular outcomes of type 2 diabetic patients in Japan.

Registry-based Diabetes Risk Detection Schema for the Systematic Identification of Patients at Risk for Diabetes in West Virginia Primary Care Centers

PubMed Central

Baus, Adam; Wood, Gina; Pollard, Cecil; Summerfield, Belinda; White, Emma

2013-01-01

Approximately 466,000 West Virginians, or about 25 percent of the state population, have prediabetes and are at high risk for developing type 2 diabetes. Appropriate lifestyle intervention can prevent or delay the onset of type 2 diabetes if individuals at risk are identified and treated early. The West Virginia Diabetes Prevention and Control Program and the West Virginia University Office of Health Services Research are developing a systematic approach to diabetes prevention within primary care. This study aims to demonstrate the viability of patient registry software for the analysis of disparate electronic health record (EHR) data sets and standardized identification of at-risk patients for early detection and intervention. Preliminary analysis revealed that of 94,283 patients without a documented diagnosis of diabetes or prediabetes, 10,673 (11.3 percent) meet one or more of the risk criteria. This study indicates that EHR data can be repurposed into an actionable registry for prevention. This model supports meaningful use of EHRs, the Patient-Centered Medical Home program, and improved care through enhanced data management. PMID:24159274

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.

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

Compliance with guidelines for disease management in diabetes: results from the SwissDiab Registry.

PubMed

Schimke, Katrin E; Renström, Frida; Meier, Sandro; Stettler, Christoph; Brändle, Michael

2018-01-01

Tight glycemic control and aggressive treatment of additional cardiovascular risk factors can substantially reduce risk of diabetes-related complications. In 2013, the Swiss Society of Endocrinology and Diabetology (SSED) established national criteria on good disease management in diabetes, but little is known about compliance in clinical care. Here we assessed to what extent patients from two tertiary care centers in the German-speaking part of Switzerland enrolled in the Swiss Diabetes (SwissDiab) Registry adhere to the SSED criteria. SwissDiab is a prospective observational cohort study of patients regularly treated at Swiss tertiary diabetes centers. Data were collected through standardized annual health examinations. Baseline participant descriptive statistics, stratified by diabetes mellitus type 1 (DM1) and type 2 (DM2), were compared with SSED targets for glycemic control, blood pressure, blood lipids, weight maintenance, and ophthalmic examination. By the end of 2016, 604 participants with DM1 (40%) and DM2 (60%) had data available for analyses, 36% and 29% women, respectively. At baseline, all the SSED targets were met with two exceptions: a glycated hemoglobin A1c value <7% was measured in 32% of participants with DM1 (SSED target: ≥40%) and 47% and 56% of overweight or obese participants with DM1 and DM2, respectively, received nutritional counseling in the previous year (SSED target: ≥80%). The SSED targets for good disease management in diabetes were achieved in the majority of participants at the time of enrollment, but results also highlight areas where disease management can be improved, particularly the role of nutrition counseling.

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.

Association of Pulmonary Tuberculosis and Diabetes in Mexico: Analysis of the National Tuberculosis Registry 2000–2012

PubMed Central

Delgado-Sánchez, Guadalupe; García-García, Lourdes; Castellanos-Joya, Martín; Cruz-Hervert, Pablo; Ferreyra-Reyes, Leticia; Ferreira-Guerrero, Elizabeth; Hernández, Andrés; Ortega-Baeza, Victor Manuel; Montero-Campos, Rogelio; Sulca, José Antonio; Martínez-Olivares, Ma. de Lourdes; Mongua-Rodríguez, Norma; Baez-Saldaña, Renata; González-Roldán, Jesús Felipe; López-Gatell, Hugo; Ponce-de-León, Alfredo; Sifuentes-Osornio, José; Jiménez-Corona, María Eugenia

2015-01-01

Background Tuberculosis (TB) remains a public health problem in Mexico while the incidence of diabetes mellitus type 2 (DM) has increased rapidly in recent years. Objective To describe the trends of incidence rates of pulmonary TB associated with DM and not associated with DM and to compare the results of treatment outcomes in patients with and without DM. Materials and Methods We analysed the National Tuberculosis Registry from 2000 to 2012 including patients with pulmonary TB among individuals older than 20 years of age. The association between DM and treatment failure was analysed using logistic regression, accounting for clustering due to regional distribution. Results In Mexico from 2000 to 2012, the incidence rates of pulmonary TB associated to DM increased by 82.64%, (p <0.001) in contrast to rates of pulmonary TB rate without DM, which decreased by 26.77%, (p <0.001). Patients with a prior diagnosis of DM had a greater likelihood of failing treatment (adjusted odds ratio, 1.34 (1.11–1.61) p <0.002) compared with patients who did not have DM. There was statistical evidence of interaction between DM and sex. The odds of treatment failure were increased in both sexes. Conclusion Our data suggest that the growing DM epidemic has an impact on the rates of pulmonary TB. In addition, patients who suffer from both diseases have a greater probability of treatment failure. PMID:26075393

Maturity-onset diabetes of the young (MODY) in Brazil: Establishment of a national registry and appraisal of available genetic and clinical data.

PubMed

Giuffrida, Fernando M A; Moises, Regina S; Weinert, Leticia S; Calliari, Luis E; Manna, Thais Della; Dotto, Renata P; Franco, Luciana F; Caetano, Lilian A; Teles, Milena G; Lima, Renata Andrade; Alves, Crésio; Dib, Sergio A; Silveiro, Sandra P; Dias-da-Silva, Magnus R; Reis, Andre F

2017-01-01

Maturity-Onset Diabetes of the Young (MODY) comprises a heterogeneous group of monogenic forms of diabetes caused by mutations in at least 14 genes, but mostly by mutations in Glucokinase (GCK) and hepatocyte nuclear factor-1 homeobox A (HNF1A). This study aims to establish a national registry of MODY cases in Brazilian patients, assessing published and unpublished data. 311 patients with clinical characteristics of MODY were analyzed, with unpublished data on 298 individuals described in 12 previous publications and 13 newly described cases in this report. 72 individuals had GCK mutations, 9 described in Brazilian individuals for the first time. One previously unpublished novel GCK mutation, Gly178Ala, was found in one family. 31 individuals had HNF1A mutations, 2 described for the first time in Brazilian individuals. Comparisons of GCK probands vs HNF1A: age 16±11 vs 35±20years; age at diagnosis 11±8 vs 21±7years; BMI 19±6 vs 25±6kg/m 2 ; sulfonylurea users 5 vs 83%; insulin users 5 vs 17%; presence of arterial hypertension 0 vs. 33%, all p<0.05. No differences were observed in lipids and C-peptide. Most MODY cases in Brazil are due to GCK mutations. In agreement with other studied populations, novel mutations are common. Only 14% of patients with familial diabetes carry a HNF1A mutation. Diagnosis of other rare forms of MODY is still a challenge in Brazilian population, as well as adequate strategies to screen individuals for molecular diagnosis. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Managing type 1 diabetes: trends and outcomes over 20 years in the Wisconsin Diabetes Registry cohort.

PubMed

Palta, Mari; LeCaire, Tamara

2009-08-01

The Wisconsin Diabetes Registry Study is a Wisconsin cohort of patients with type 1 diabetes, who were diagnosed in 1987-1992 and actively followed. The study provides patients and health care professionals with better prognostic information and helps identify aspects of diabetes management that need improvement. To describe diabetes management and acute and chronic complications from the time of diagnosis. All incident cases diagnosed at age <30 in 28 counties were eligible and 590 enrolled. A baseline interview, blood sample kits, biannual/annual questionnaires and study examinations at 4, 7, 9, 14, and 20 years duration were administered. Diabetes management indicators, general health, and acute and chronic complications. Glycemic control was poor in adolescence, but improved with age. A high percentage of individuals do not meet treatment standards for blood pressure and lipid profile. Self-reported health deteriorated with age, and body mass index was similar to that of the general US population. Chronic complications were present at 15-20 years, but tended to be relatively mild. There is room for improvement in diabetes management, especially in meeting goals for blood pressure and lipid profile. Nonetheless, individuals with type 1 diabetes can be offered a more optimistic prognosis than in the past.

Compliance with guidelines for disease management in diabetes: results from the SwissDiab Registry

PubMed Central

Schimke, Katrin E; Meier, Sandro; Stettler, Christoph; Brändle, Michael

2018-01-01

Objective Tight glycemic control and aggressive treatment of additional cardiovascular risk factors can substantially reduce risk of diabetes-related complications. In 2013, the Swiss Society of Endocrinology and Diabetology (SSED) established national criteria on good disease management in diabetes, but little is known about compliance in clinical care. Here we assessed to what extent patients from two tertiary care centers in the German-speaking part of Switzerland enrolled in the Swiss Diabetes (SwissDiab) Registry adhere to the SSED criteria. Research design and methods SwissDiab is a prospective observational cohort study of patients regularly treated at Swiss tertiary diabetes centers. Data were collected through standardized annual health examinations. Baseline participant descriptive statistics, stratified by diabetes mellitus type 1 (DM1) and type 2 (DM2), were compared with SSED targets for glycemic control, blood pressure, blood lipids, weight maintenance, and ophthalmic examination. Results By the end of 2016, 604 participants with DM1 (40%) and DM2 (60%) had data available for analyses, 36% and 29% women, respectively. At baseline, all the SSED targets were met with two exceptions: a glycated hemoglobin A1c value <7% was measured in 32% of participants with DM1 (SSED target: ≥40%) and 47% and 56% of overweight or obese participants with DM1 and DM2, respectively, received nutritional counseling in the previous year (SSED target: ≥80%). Conclusions The SSED targets for good disease management in diabetes were achieved in the majority of participants at the time of enrollment, but results also highlight areas where disease management can be improved, particularly the role of nutrition counseling. PMID:29527307

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...

Improving quality of care using a diabetes registry and disease management services in an integrated delivery network.

PubMed

Campion, Francis X; Tully, George L; Barrett, Jo-Ann; Andre, Paulo; Sweeney, Ann

2005-08-01

Disease management for chronic conditions is a call for collaboration among all parties of the health care system. The Caritas Christi Health Care System established a unified American Diabetes Association (ADA) recognized outpatient diabetes self-management education program (DSME) in each of its six hospital communities and has established an Internet data portal with managed care organizations to improve preventive care for thousands of patients with diabetes. This article describes the stepwise process of building the successful Caritas Diabetes Care Program and the central role of the Caritas Diabetes Registry over a 5-year period.

A cross-sectional view of the current state of treatment of youth with type 2 diabetes in the USA: Enrollment data from the Pediatric Diabetes Consortium type 2 diabetes registry

USDA-ARS?s Scientific Manuscript database

To describe the clinical characteristics, treatment approaches, clinical outcomes, and co-morbidities of youth with type 2 diabetes (T2D) enrolled in the Pediatric Diabetes Consortium (PDC) T2D Registry. PDC enrolled 598 youth <21 yr of age with T2D from February 2012 to July 2015 at eight centers. ...

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.

Renal replacement therapy in Europe: a summary of the 2013 ERA-EDTA Registry Annual Report with a focus on diabetes mellitus.

PubMed

Kramer, Anneke; Pippias, Maria; Stel, Vianda S; Bonthuis, Marjolein; Abad Diez, José Maria; Afentakis, Nikolaos; Alonso de la Torre, Ramón; Ambuhl, Patrice; Bikbov, Boris; Bouzas Caamaño, Encarnación; Bubic, Ivan; Buturovic-Ponikvar, Jadranka; Caskey, Fergus J; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Comas Farnés, Jordi; Garcia Bazaga, Maria de Los Ángeles; De Meester, Johan; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; G Heaf, James; Hemmelder, Marc; Ioannou, Kyriakos; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Lassalle, Mathilde; Lezaic, Visnja; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera Celestino, Celestino; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Stendahl, Maria; Strakosha, Ariana; Süleymanlar, Gültekin; Torres Guinea, Marta; Varberg Reisæter, Anna; Vazelov, Evgueniy; Ziginskiene, Edita; Massy, Ziad A; Wanner, Christoph; Jager, Kitty J; Noordzij, Marlies

2016-06-01

This article provides a summary of the 2013 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry Annual Report (available at http://www.era-edta-reg.org), with a focus on patients with diabetes mellitus (DM) as the cause of end-stage renal disease (ESRD). In 2015, the ERA-EDTA Registry received data on renal replacement therapy (RRT) for ESRD from 49 national or regional renal registries in 34 countries in Europe and bordering the Mediterranean Sea. Individual patient data were provided by 31 registries, while 18 registries provided aggregated data. The total population covered by the participating registries comprised 650 million people. In total, 72 933 patients started RRT for ESRD within the countries and regions reporting to the ERA-EDTA Registry, resulting in an overall incidence of 112 per million population (pmp). The overall prevalence on 31 December 2013 was 738 pmp (n = 478 990). Patients with DM as the cause of ESRD comprised 24% of the incident RRT patients (26 pmp) and 17% of the prevalent RRT patients (122 pmp). When compared with the USA, the incidence of patients starting RRT pmp secondary to DM in Europe was five times lower and the incidence of RRT due to other causes of ESRD was two times lower. Overall, 19 426 kidney transplants were performed (30 pmp). The 5-year adjusted survival for all RRT patients was 60.9% [95% confidence interval (CI) 60.5-61.3] and 50.6% (95% CI 49.9-51.2) for patients with DM as the cause of ESRD.

Type II diabetes and its therapy in clinical practice - results from the standardised non-interventional registry SIRTA.

PubMed

Gallwitz, B; Kusterer, K; Hildemann, S; Fresenius, K

2014-12-01

Modern antidiabetic therapies should achieve low HbA1c values and avoid hypoglycaemic complications. The registry SIRTA included 1522 patients with type II diabetes mellitus (T2DM) from 306 German medical practices. Patients had an HbA1c > 6.5% under the maximum tolerated metformin dose. If required, they received combination therapy with other antidiabetics according to the guideline of the German Diabetes Society [Deutsche Diabetes Gesellschaft (DDG)] or usual medical practice. Patients were followed up for 6 months. The target criteria included the achievement of HbA1c target values and the emergence of severe hypoglycaemic episodes. Most patients (64.0%) were planned to achieve an HbA1c target < 6.5%, the standard target recommended by the 2009 DDG guideline valid throughout the registry. Primarily to reduce the individual risk for hypoglycaemia, 32.4% of patients had a less strict HbA1c-target of 6.5-7.0%. These targets were achieved by 31.3% and 44.3% of patients, respectively. Combination therapies increased from 45% to 56% over the 6 months registry. Four patients had severe hypoglycaemias (0.26%). The registry confirms results from other epidemiologic studies on the therapy of T2DM in everyday practice. The treatment strategies applied effectively reduced blood glucose and avoided severe hypoglycaemias. An early therapy of insufficiently controlled patients with T2DM is important, as lower baseline values facilitated achieving HbA1c targets. © 2014 The Authors. International Journal of Clinical Practice Published by John Wiley & Sons Ltd.

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...

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

PubMed

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

2017-04-01

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

Diabetes mellitus, admission glucose, and outcomes after stroke thrombolysis: a registry and systematic review.

PubMed

Desilles, Jean-Philippe; Meseguer, Elena; Labreuche, Julien; Lapergue, Bertrand; Sirimarco, Gaia; Gonzalez-Valcarcel, Jaime; Lavallée, Philippa; Cabrejo, Lucie; Guidoux, Celine; Klein, Isabelle; Amarenco, Pierre; Mazighi, Mikael

2013-07-01

The potential detrimental effect of diabetes mellitus and admission glucose level (AGL) on outcomes after stroke thrombolysis is unclear. We evaluated outcomes of patients treated by intravenous and/or intra-arterial therapy, according to diabetes mellitus and AGL. We analyzed data from a patient registry (n=704) and conducted a systematic review of previous observational studies. The primary study outcome was the percentage of patients who achieved a favorable outcome (modified Rankin score ≤2 at 3 months). We identified 54 previous reports that evaluated the effect of diabetes mellitus or AGL on outcomes after thrombolysis. In an unadjusted meta-analysis that included our registry data and previous available observational data, diabetes mellitus was associated with less favorable outcome (odds ratio [OR], 0.76; 95% confidence interval [CI], 0.73-0.79) and more symptomatic intracranial hemorrhage (OR, 1.38; 95% CI, 1.21-1.56). However, in multivariable analysis, diabetes mellitus remained associated with less favorable outcome (OR, 0.77; 95% CI, 0.69-0.87) but not with symptomatic intracranial hemorrhage (OR, 1.11; 95% CI, 0.83-1.48). In unadjusted and in adjusted meta-analysis, higher AGL was associated with less favorable outcome and more symptomatic intracranial hemorrhage; the adjusted OR (95% CI) per 1 mmol/L increase in AGL was 0.92 (0.90-0.94) for favorable outcome, and 1.09 (1.04-1.14) for symptomatic intracranial hemorrhage. These results confirm that AGL and history of diabetes mellitus are associated with poor clinical outcome after thrombolysis. AGL may be a surrogate marker of brain infarction severity rather than a causal factor. However, randomized controlled evidences are needed to address the significance of a tight glucose control during thrombolysis on clinical outcome.

Telephone Intervention to Improve Diabetes Control: A Randomized Trial in the New York City A1c Registry.

PubMed

Chamany, Shadi; Walker, Elizabeth A; Schechter, Clyde B; Gonzalez, Jeffrey S; Davis, Nichola J; Ortega, Felix M; Carrasco, Jeidy; Basch, Charles E; Silver, Lynn D

2015-12-01

Scalable self-management interventions are necessary to address suboptimal diabetes control, especially among minority populations. The study tested the effectiveness of a telephone behavioral intervention in improving glycemic control among adults with diabetes in the New York City A1c Registry. RCT comparing a telephone intervention to print-only intervention in the context of the A1c Registry program. Nine hundred forty-one adults with diabetes and hemoglobin A1c (A1c) >7% from a low-income, predominantly Latino population in the South Bronx were recruited from the A1c Registry. All study participants were mailed print diabetes self-management materials at baseline and modest lifestyle incentives quarterly. Only the telephone participants received four calls from health educators evenly spaced over 1 year if baseline A1c was >7%-9%, or eight calls if baseline A1c was >9%. Medication adherence was the main behavioral focus and, secondarily, nutrition and exercise. Primary outcome was difference between two study arms in change in A1c from baseline to 1 year. Secondary outcomes included diabetes self-care activities, including self-reported medication adherence. Data were collected in 2008-2012 and analyzed in 2012-2014. Participants were predominantly Latino (67.7%) or non-Latino black (28%), with 69.7% foreign-born and 55.1% Spanish-speaking. Among 694 (74%) participants with follow-up A1c, mean A1c decreased by 0.9 (SD=0.1) among the telephone group compared with 0.5 (SD=0.1) among the print-only group, a difference of 0.4 (95% CI=0.09, 0.74, p=0.01). The intervention had significant effect when baseline A1c was >9%. Both groups experienced similar improvements in self-care activities, medication adherence, and intensification. A telephone intervention delivered by health educators can be a clinically effective tool to improve diabetes control in diverse populations, specifically for those with worse metabolic control identified using a registry. This public

Initial presentation of type 2 diabetes in adolescents predicts durability of successful treatment with metformin monotherapy: Insights from the pediatric diabetes consortium T2D registry

USDA-ARS?s Scientific Manuscript database

Many adolescents with type 2 diabetes (T2D) have rapid deterioration of glycemic control on metformin monotherapy within 2 years of diagnosis. Enrollment data from the Pediatric Diabetes Consortium T2D registry were used to categorize 276 youth with a T2D duration >/-2 years into two groups: (1) par...

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...

Renal replacement therapy in Europe: a summary of the 2013 ERA-EDTA Registry Annual Report with a focus on diabetes mellitus

PubMed Central

Kramer, Anneke; Pippias, Maria; Stel, Vianda S.; Bonthuis, Marjolein; Abad Diez, José Maria; Afentakis, Nikolaos; Alonso de la Torre, Ramón; Ambuhl, Patrice; Bikbov, Boris; Bouzas Caamaño, Encarnación; Bubic, Ivan; Buturovic-Ponikvar, Jadranka; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Comas Farnés, Jordi; Garcia Bazaga, Maria de los Ángeles; De Meester, Johan; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; G. Heaf, James; Hemmelder, Marc; Ioannou, Kyriakos; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Lassalle, Mathilde; Lezaic, Visnja; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera Celestino, Celestino; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Stendahl, Maria; Strakosha, Ariana; Süleymanlar, Gültekin; Torres Guinea, Marta; Varberg Reisæter, Anna; Vazelov, Evgueniy; Ziginskiene, Edita; Massy, Ziad A.; Wanner, Christoph; Jager, Kitty J.; Noordzij, Marlies

2016-01-01

Background This article provides a summary of the 2013 European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) Registry Annual Report (available at http://www.era-edta-reg.org), with a focus on patients with diabetes mellitus (DM) as the cause of end-stage renal disease (ESRD). Methods In 2015, the ERA-EDTA Registry received data on renal replacement therapy (RRT) for ESRD from 49 national or regional renal registries in 34 countries in Europe and bordering the Mediterranean Sea. Individual patient data were provided by 31 registries, while 18 registries provided aggregated data. The total population covered by the participating registries comprised 650 million people. Results In total, 72 933 patients started RRT for ESRD within the countries and regions reporting to the ERA-EDTA Registry, resulting in an overall incidence of 112 per million population (pmp). The overall prevalence on 31 December 2013 was 738 pmp (n = 478 990). Patients with DM as the cause of ESRD comprised 24% of the incident RRT patients (26 pmp) and 17% of the prevalent RRT patients (122 pmp). When compared with the USA, the incidence of patients starting RRT pmp secondary to DM in Europe was five times lower and the incidence of RRT due to other causes of ESRD was two times lower. Overall, 19 426 kidney transplants were performed (30 pmp). The 5-year adjusted survival for all RRT patients was 60.9% [95% confidence interval (CI) 60.5–61.3] and 50.6% (95% CI 49.9–51.2) for patients with DM as the cause of ESRD. PMID:27274834

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

Exploring the feasibility of combining chronic disease patient registry data to monitor the status of diabetes care.

PubMed

Kemple, Angela M; Hartwick, Noelle; Sitaker, Marilyn H; Harmon, Jeanne J; Clark, Kathleen; Norman, Jan

2008-10-01

To provide direction and to support improvements in diabetes care, states must be able to measure the effectiveness of interventions and gain feedback on progress. We wanted to know if data from multiple health clinics that are implementing quality improvement strategies could be combined to provide useful measurements of diabetes care processes and control of intermediate outcomes. We combined and analyzed electronic patient health data from clinic sites across Washington State that used the Chronic Disease Electronic Management System (CDEMS) registry. The data were used to determine whether national and state objectives for diabetes care were met. We calculated the percentage of patients that met standards of care in 2004. The pooled dataset included 17,349 adult patients with diabetes from 90 clinics. More than half of patients were above recommended target levels for hemoglobin A1c testing, foot examination, hemoglobin A1c control, and low-density lipoprotein cholesterol control. Fewer patients met recommendations for nephropathy assessment, eye examinations, and blood pressure control. In terms of meeting these standards, rates of diabetes care varied across clinics. CDEMS rates of care were compared with those reported by other data sources, but no consistent pattern of similarities or differences emerged. With committed staff time, provider support, and resources, data from clinical information systems like CDEMS can be combined to address a deficiency in state-level diabetes surveillance and evaluation systems--specifically, the inability to capture clinical biometric values to measure intermediate health outcomes. These data can complement other surveillance and evaluation data sources to help provide a better picture of diabetes care in a state.

Rationale and design of a multidisciplinary national real-world registry on carotid stenting: the Italian Registry for Carotid Stenting (RISC).

PubMed

Biasi, Giorgio M; Deleo, Gaetano; Froio, Alberto; Cremonesi, Alberto; Inglese, Luigi; Lavitrano, Marialuisa; Setacci, Carlo

2006-04-01

The Registro Italiano per lo Stenting Carotideo (RISC, Italian Registry for Carotid Stenting) has been organized by Italian specialists from different disciplines directly involved in the prevention of stroke due to carotid plaques through stenting of carotid lesions. The Registry has been endorsed by the national societies of 4 different specialties: vascular surgery, interventional cardiology, radiology, and neuroradiology. Each society contributed in the planning stage. The basis for the registry is to collect data on carotid stenting procedures performed by different specialists with different techniques in a "real-world" setting without the limitations of a randomized clinical trial. The Registry was funded to enroll at least 1200 patients over a minimum period of 36 months. The results will be analyzed using the intention-to-treat principle and are anticipated in late 2006. Primary endpoints of the registry are the 30-day combined death and stroke rate and the occurrence of restenosis and ipsilateral neurological deficit at 12 and 24 months. Considerable attention has been paid to the registry's quality control program to ensure scientific validation. An online database facilitates the collection of data with speed and accuracy.

Diabetes mellitus in Friedreich Ataxia: A case series of 19 patients from the German-Austrian diabetes mellitus registry.

PubMed

Pappa, Angeliki; Häusler, Martin G; Veigel, Andreas; Tzamouranis, Konstantina; Pfeifer, Martin W; Schmidt, Andreas; Bökamp, Martin; Haberland, Holger; Wagner, Siegfried; Brückel, Joachim; de Sousa, Gideon; Hackl, Lukas; Bollow, Esther; Holl, Reinhard W

2018-05-12

Friedreich ataxia (FRDA) is a multisystem autosomal recessive disease with progressive clinical course involving the neuromuscular and endocrine system. Diabetes mellitus (DM) is one typical non-neurological manifestation, caused by beta cell failure and insulin resistance. Because of its rarity, knowledge on DM in FRDA is limited. Based on data from 200 301 patients with DM of the German-Austrian diabetes registry (DPV) and two exemplary patient reports, characteristics of patients with DM and FRDA are compared with classical type 1 or type 2 diabetes. Diabetes phenotype in FRDA is intermediate between type 1 and type 2 diabetes with ketoacidosis being frequent at presentation and blood glucose levels similar to T1Dm but higher than in T2Dm (356 ±165 and 384± 203 mg/dl). 63.2% of FRDA patients received insulin monotherapy, 21% insulin plus oral antidiabetics and 15.8% lifestyle change only, applying similar doses of insulin in all three groups. FRDA patients did not show overweight and HbA1c levels were even lower than in T1Dm or T2Dm patients, respectively, indicating good overall diabetes control. FRDADm can be controlled by individualized treatment regimen with insulin or oral antidiabetics. Patients with DM in FRDA may show a relevant risk to ketoacidotic complications, which should be avoided. Copyright © 2018 Elsevier B.V. All rights reserved.

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.

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.

Revascularization Trends in Patients With Diabetes Mellitus and Multivessel Coronary Artery Disease Presenting With Non-ST Elevation Myocardial Infarction: Insights From the National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get with the Guidelines (NCDR ACTION Registry-GWTG).

PubMed

Pandey, Ambarish; McGuire, Darren K; de Lemos, James A; Das, Sandeep R; Berry, Jarett D; Brilakis, Emmanouil S; Banerjee, Subhash; Marso, Steven P; Barsness, Gregory W; Simon, DaJuanicia N; Roe, Matthew; Goyal, Abhinav; Kosiborod, Mikhail; Amsterdam, Ezra A; Kumbhani, Dharam J

2016-05-01

Current guidelines recommend surgical revascularization (coronary artery bypass graft [CABG]) over percutaneous coronary intervention (PCI) in patients with diabetes mellitus and multivessel coronary artery disease. Few data are available describing revascularization patterns among these patients in the setting of non-ST-segment-elevation myocardial infarction. Using Acute Coronary Treatment and Intervention Outcomes Network Registry-Get with the Guidelines (ACTION Registry-GWTG), we compared the in-hospital use of different revascularization strategies (PCI versus CABG versus no revascularization) in diabetes mellitus patients with non-ST-segment-elevation myocardial infarction who had angiography, demonstrating multivessel coronary artery disease between July 2008 and December 2014. Factors associated with use of CABG versus PCI were identified using logistic multivariable regression analyses. A total of 29 769 patients from 539 hospitals were included in the study, of which 10 852 (36.4%) were treated with CABG, 13 760 (46.2%) were treated with PCI, and 5157 (17.3%) were treated without revascularization. The overall use of revascularization increased over the study period with an increase in the proportion undergoing PCI (45% to 48.9%; Ptrend=0.0002) and no change in the proportion undergoing CABG (36.1% to 34.7%; ptrend=0.88). There was significant variability between participating hospitals in the use of PCI and CABG (range: 22%-100%; 0%-78%, respectively; P value <0.0001 for both). Patient-level, but not hospital-level, characteristics were statistically associated with the use of PCI versus CABG, including anatomic severity of the disease, early treatment of adenosine diphosphate receptor antagonists at presentation, older age, female sex, and history of heart failure. Among patients with diabetes mellitus and multivessel coronary artery disease presenting with non-ST-segment-elevation myocardial infarction, only one third undergo CABG during the

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

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.

Exploring correlates of diabetes-related stress among adults with Type 1 diabetes in the T1D exchange clinic registry.

PubMed

Boden, Matthew Tyler; Gala, Sasha

2018-04-01

To explore relations between diabetes-related stress and multiple sociodemographic, diabetes health, other health, and treatment-related variables among a large sample of adults with Type 1 Diabetes (T1D). The sample consisted of 10,821 adults (over 18 years old) enrolled in the T1D Exchange Clinic Registry. The T1D Exchange clinic network consists of 67 diabetes clinical centers throughout the United States selected to broadly represent pediatric and adult patients with T1D. Variables were assessed through participant self-report and extraction of clinic chart data. Univariate and multiple linear regression (with simultaneous entry of all predictors) analyses were conducted. Robustly associated with increased diabetes-related stress across analyses were multiple sociodemographic (female [vs. male], native Hawaiian/other Pacific islander [vs. white/Caucasian], decreased age and diabetes duration), diabetes health (higher HbA1c), other health (lower general health, presence of major life stress and depression, less physical activity), and treatment related variables (use of injections/pen or combination injection/pen/pump [vs. pump], use of CGM, increased frequency of missing insulin doses and BG checking, decreased frequency of BG checking prior to bolus, receipt of mental health treatment). We replicated and extended research demonstrating that diabetes-related stress among people with T1D occurs at higher levels among those with particular sociodemographic characteristics and is associated with a range poorer diabetes health and other health variables, and multiple treatment-related variables. The strong incremental prediction of diabetes-related stress by multiple variables in our study suggests that a multi-variable, personalized approach may increase the effectiveness of treatments for diabetes-related stress. Published by Elsevier B.V.

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

Use of insulin pump therapy in children and adolescents with type 1 diabetes and its impact on metabolic control: comparison of results from three large, transatlantic paediatric registries.

PubMed

Sherr, Jennifer L; Hermann, Julia M; Campbell, Fiona; Foster, Nicole C; Hofer, Sabine E; Allgrove, Jeremy; Maahs, David M; Kapellen, Thomas M; Holman, Naomi; Tamborlane, William V; Holl, Reinhard W; Beck, Roy W; Warner, Justin T

2016-01-01

While the use of insulin pumps in paediatrics has expanded dramatically, there is still considerable variability among countries in the use of pump technology. The present study sought to describe differences in metabolic control and pump use in young people with type 1 diabetes using data collected in three multicentre registries. Data for the years 2011 and 2012 from 54,410 children and adolescents were collected from the Prospective Diabetes Follow-up Registry (DPV; n = 26,198), T1D Exchange (T1DX; n = 13,755) and the National Paediatric Diabetes Audit (NPDA; n = 14,457). The modality of insulin delivery, based on age, sex and ethnic minority status, and the impact of pump use on HbA1c levels were compared. The overall mean HbA1c level was higher in the NPDA (8.9 ± 1.6% [74 ± 17.5 mmol/mol]) than in the DPV (8.0 ± 1.6% [64 ± 17.0 mmol/mol], p < 0.001) and T1DX (8.3 ± 1.4% [68 ± 15.4 mmol/mol], p < 0.001). Conversely, pump use was much lower in the NPDA (14%) than in the DPV (41%, p < 0.001) and T1DX (47%, p < 0.001). In a pooled analysis, pump use was associated with a lower mean HbA1c (pump: 8.0 ± 1.2% [64 ± 13.3 mmol/mol] vs injection: 8.5 ± 1.7% [69 ± 18.7 mmol/mol], p < 0.001). In all three registries, those with an ethnic minority status were less likely to be treated with a pump (p < 0.001) and boys were treated with a pump less often compared with girls (p < 0.001). Despite similar clinical characteristics and proportion of minority participants, substantial differences in metabolic control exist across the three large transatlantic registries of paediatric patients with type 1 diabetes, which appears to be due in part to the frequency of insulin pump therapy.

Registry of people with diabetes in three Latin American countries: a suitable approach to evaluate the quality of health care provided to people with type 2 diabetes.

PubMed

Commendatore, V; Dieuzeide, G; Faingold, C; Fuente, G; Luján, D; Aschner, P; Lapertosa, S; Villena Chávez, J; Elgart, J; Gagliardino, J J

2013-12-01

To implement a patient registry and collect data related to the care provided to people with type 2 diabetes in six specialized centers of three Latin American countries, measure the quality of such care using a standardized form (QUALIDIAB) that collects information on different quality of care indicators, and analyze the potential of collecting this information for improving quality of care and conducting clinical research. We collected data on clinical, metabolic and therapeutic indicators, micro- and macrovascular complications, rate of use of diagnostic and therapeutic elements and hospitalization of patients with type 2 diabetes in six diabetes centers, four in Argentina and one each in Colombia and Peru. We analyzed 1157 records from patients with type 2 diabetes (Argentina, 668; Colombia, 220; Peru, 269); 39 records were discarded because of data entry errors or inconsistencies. The data demonstrated frequency performance deficiencies in several procedures, including foot and ocular fundus examination and various cardiovascular screening tests. In contrast, HbA1c and cardiovascular risk factor assessments were performed with a greater frequency than recommended by international guidelines. Management of insulin therapy was sub-optimal, and deficiencies were also noted among diabetes education indicators. Patient registry was successfully implemented in these clinics following an interactive educational program. The data obtained provide useful information as to deficiencies in care and may be used to guide quality of care improvement efforts. © 2013 John Wiley & Sons Ltd.

Clinical outcomes with Biolimus (A9)™ eluting stent, 'BioMatrix' in diabetic patients--interim results from multicenter post market surveillance registry in India.

PubMed

Seth, Ashok; Hiremath, Shirish; Dani, Sameer; Kapoor, Sunil; Jain, R K; Abhaichand, Rajpal; Trivedi, Shailendra; Kaul, Upendra; Patil, Aruna; Khemnar, Bhushan; Rangnekar, Hrishikesh

2013-01-01

The objective of this registry is to establish safety and efficacy of BioMatrix, BioMatrix™-Biolimus A9™ eluting stent in diabetic population in India. Diabetes mellitus is a major predisposing factor for coronary artery disease. Prognosis for diabetic population patients presenting with coronary artery disease who undergo coronary revascularization is inferior to non diabetics and remains an independent risk factor of restenosis, need for revascularization, and overall mortality. Stent thrombosis is a potential complication of first generation, permanent polymer drug-eluting stents. Biodegradable polymer is a good relief in this era and its utility in diabetic patients will be a major advantage for them. 334 patients with diabetes mellitus and requiring angioplasty, implanted with BioMatrix stent were followed at 1, 6, 12 and 24 months who entered in a multicenter registry in India. We analyzed the incidence of major adverse cardiac events (MACE) and stent thrombosis (ST) at 1, 6, 12 and 24 months. The mean age was 58.71 ± 9.2 years, 81% were males, comorbidity index was 1.6 ± 1.02, and 59.1% presented with acute coronary syndrome. The incidence of adverse event rates was: MACE 1.27%. There were no incidences of myocardial infarction (MI) and target vessel revascularization (TVR). Definite stent thrombosis occurred only in 2 patients. In this registry of diabetic population treated with BioMatrixTM-Biolimus A9TM eluting stent (BioMatrix), the reported incidence of MACE and ST were much lower than previously published results. The 1- and 2-year follow-up result supports favorable clinical outcomes of using BioMatrix stents as a suitable alternative to contemporary DES available during PCI in diabetic patients. Copyright © 2013 Cardiological Society of India. Published by Elsevier B.V. All rights reserved.

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

In-Hospital Implementation of Evidence-Based Medications is Associated with Improved Survival in Diabetic Patients with Acute Coronary Syndrome - Data from TSOC ACS-DM Registry.

PubMed

Chen, Kuan-Chun; Yin, Wei-Hsian; Wu, Chih-Cheng; Chan, Shih-Hung; Wu, Yen-Wen; Yang Wang, Kuo; Chang, Kuan-Cheng; Hwang, Juey-Jen; Voon, Wen-Chol; Hsieh, I-Chang; Chong, Jun-Ted; Lin, Wei-Shiang; Hsu, Chih-Neng; Ueng, Kwo-Chang; Hsia, Chih-Ping; Liu, Ju-Chi; Yeh, Jong-Shiuan; Mar, Guang-Yuan; Shih, Jhih-Yuan; Kuo, Jen-Yuan; Tsao, Hsuan-Ming; Tseng, Wei-Kung; Yang, Cheng-Hsu; Chang, Chao-Chien; Chiang, Chern-En; Lei, Meng-Heng; Lin, Jeng-Feng; Shyu, Kou-Gi

2018-05-01

Patients with acute coronary syndrome (ACS) and diabetes mellitus (DM) receive less aggressive treatment and have worse outcomes in Taiwan. We sought to explore whether the current practices of prescribing guideline-directed medical therapy (GDMT) for ACS and clinical outcomes have improved over time. A total of 1534 consecutive diabetic patients with ACS were enrolled between 2013 and 2015 from 27 hospitals in the nationwide registry initiated by the Taiwan Society of Cardiology (the TSOC ACS-DM Registry). Baseline and clinical demographics, treatment, and clinical outcomes were compared to those of 1000 ACS patients with DM recruited in the Taiwan ACS-full spectrum (ACS-FS) Registry, which was performed between 2008 and 2010. Compared to the DM patients in the Taiwan ACS-FS Registry, even though reperfusion therapy was carried out in significantly fewer patients, the primary percutaneous coronary intervention (PCI) rate for ST-segment elevation myocardial infarction (STEMI) and the prescription rates of GDMT for ACS including P2Y12 inhibitors, renin-angiotensin blockers, beta-blockers, and statins were significantly higher in those in the TSOC ACS-DM Registry. Moreover, significant reductions in 1-year mortality, recurrent nonfatal MI and stroke were observed compared to those of the DM patients in the Taiwan ACS-FS Registry. Multivariate analysis identified reperfusion therapy in combination with GDMT as a strong predictor of better 1-year outcomes [hazard ratio (95% confidence interval) = 0.54 (0.33-0.89)]. Marked improvements in performing primary PCI for STEMI and prescribing GDMT for ACS were observed over time in Taiwan. This was associated with improved 1-year event-free survival in the diabetic patients with ACS.

End-stage renal disease and survival in people with diabetes: a national database linkage study

PubMed Central

Fletcher, E.H.; Brady, I.; Looker, H.C.; Levin, D.; Joss, N.; Traynor, J.P.; Metcalfe, W.; Conway, B.; Livingstone, S.; Leese, G.; Philip, S.; Wild, S.; Halbesma, N.; Sattar, N.; Lindsay, R.S.; McKnight, J.; Pearson, D.; Colhoun, H.M.

2015-01-01

Background: Increasing prevalence of diabetes worldwide is projected to lead to an increase in patients with end-stage renal disease (ESRD) requiring renal replacement therapy (RRT). Aim: To provide contemporary estimates of the prevalence of ESRD and requirement for RRT among people with diabetes in a nationwide study and to report associated survival. Methods: Data were extracted and linked from three national databases: Scottish Renal Registry, Scottish Care Initiative-Diabetes Collaboration and National Records of Scotland death data. Survival analyses were modelled with Cox regression. Results: Point prevalence of chronic kidney disease (CKD)5 in 2008 was 1.63% of 19 414 people with type 1 diabetes (T1DM) compared with 0.58% of 167 871 people with type 2 diabetes (T2DM) (odds ratio for DM type 0.97, P = 0.77, on adjustment for duration. Although 83% of those with T1DM and CKD5 and 61% of those with T2DM and CKD5 were receiving RRT, there was no difference when adjusted for age, sex and DM duration (odds ratio for DM type 0.83, P = 0.432). Diabetic nephropathy was the primary renal diagnosis in 91% of people with T1DM and 58% of people with T2DM on RRT. Median survival time from initiation of RRT was 3.84 years (95% CI 2.77, 4.62) in T1DM and 2.16 years (95% CI: 1.92, 2.38) in T2DM. Conclusion: Considerable numbers of patients with diabetes continue to progress to CKD5 and RRT. Almost half of all RRT cases in T2DM are considered to be due to conditions other than diabetic nephropathy. Median survival time for people with diabetes from initiation of RRT remains poor. These prevalence data are important for future resource planning. PMID:25140030

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.

National registry of hemoglobinopathies in Spain (REPHem).

PubMed

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

2017-07-01

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

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...

Recent Trends in Diabetes Knowledge, Perceptions, and Behaviors: Implications for National Diabetes Education

ERIC Educational Resources Information Center

Piccinino, Linda; Griffey, Susan; Gallivan, Joanne; Lotenberg, Lynne Doner; Tuncer, Diane

2015-01-01

Objectives: Examine trends in diabetes-related knowledge, perceptions, and behavior among U.S. adults with and without a diagnosis of diabetes and among subpopulations at risk. Discuss implications for national diabetes education and for the National Diabetes Education Program (NDEP) in particular. Methods: Three population-based NDEP National…

Benefits of information technology-enabled diabetes management.

PubMed

Bu, Davis; Pan, Eric; Walker, Janice; Adler-Milstein, Julia; Kendrick, David; Hook, Julie M; Cusack, Caitlin M; Bates, David W; Middleton, Blackford

2007-05-01

To determine the financial and clinical benefits of implementing information technology (IT)-enabled disease management systems. A computer model was created to project the impact of IT-enabled disease management on care processes, clinical outcomes, and medical costs for patients with type 2 diabetes aged >25 years in the U.S. Several ITs were modeled (e.g., diabetes registries, computerized decision support, remote monitoring, patient self-management systems, and payer-based systems). Estimates of care process improvements were derived from published literature. Simulations projected outcomes for both payer and provider organizations, scaled to the national level. The primary outcome was medical cost savings, in 2004 U.S. dollars discounted at 5%. Secondary measures include reduction of cardiovascular, cerebrovascular, neuropathy, nephropathy, and retinopathy clinical outcomes. All forms of IT-enabled disease management improved the health of patients with diabetes and reduced health care expenditures. Over 10 years, diabetes registries saved $14.5 billion, computerized decision support saved $10.7 billion, payer-centered technologies saved $7.10 billion, remote monitoring saved $326 million, self-management saved $285 million, and integrated provider-patient systems saved $16.9 billion. IT-enabled diabetes management has the potential to improve care processes, delay diabetes complications, and save health care dollars. Of existing systems, provider-centered technologies such as diabetes registries currently show the most potential for benefit. Fully integrated provider-patient systems would have even greater potential for benefit. These benefits must be weighed against the implementation costs.

Effectiveness of selective risk based screening for Gestational Diabetes (GDM) in Malaysia: A retrospective cohort study based on the National Obstetric Registry (NOR) of Malaysia.

PubMed

Muniswaran, G; Soelar, S A; Karalasingam, S D; Bujang, M A; Jeganathan, R; Suharjono, H

2017-02-01

Gestational diabetes (GDM) has significant maternal and foetal implications. screening allows active interventions which significantly improves pregnancy outcomes. Despite World Health Organization (WHO), FIGO and National Institute of clinical Excellence (NIcE) recommendations for universal screening especially among high risk population; Malaysia currently adopts a selective risk based screening for GDM. the objective is to audit the effectiveness of the current practice of selective risk based screening in detection of GDM in Malaysia. this is a retrospective cohort study based on the National Obstetric Registry (NOR) which comprises of 14 major tertiary hospitals in Malaysia. the study period was from 1st January 2011 till 31st December 2012 and a total of 22,044 patients with GDM were analysed. Logistic regression analysis was used to calculate the crude odd ratio. the incidence of GDM in Malaysia is 8.4%. Maternal age of ≥25, booking bMI ≥27kg/m2, booking weight ≥80kg and previous hypertension are non-significant risk of developing GDM in Malaysia. Parity 5 and more was only associated with an odds-ratio of 1.02 (95% confidence Interval: 0.90-1.17) as compared to parity below 5. the association of women with previous stillbirth with GDM was not significant. current risk based screening for GDM based on maternal age, booking bMI, weight and hypertension is inappropriate. An ideal screening tool should precede disease complications, which is the novel objective of screening. Universal screening for GDM in Malaysia may be a more accurate measure, especially with regards to reducing maternal and foetal complications.

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

Clinical outcomes with Biolimus (A9)™ eluting stent, ‘BioMatrix’ in diabetic patients – interim results from multicenter post market surveillance registry in India

PubMed Central

Seth, Ashok; Hiremath, Shirish; Dani, Sameer; Kapoor, Sunil; Jain, R.K.; Abhaichand, Rajpal; Trivedi, Shailendra; Kaul, Upendra; Patil, Aruna; Khemnar, Bhushan; Rangnekar, Hrishikesh

2013-01-01

Objective The objective of this registry is to establish safety and efficacy of BioMatrix, BioMatrix™-Biolimus A9™ eluting stent in diabetic population in India. Background Diabetes mellitus is a major predisposing factor for coronary artery disease. Prognosis for diabetic population patients presenting with coronary artery disease who undergo coronary revascularization is inferior to non diabetics and remains an independent risk factor of restenosis, need for revascularization, and overall mortality. Stent thrombosis is a potential complication of first generation, permanent polymer drug-eluting stents. Biodegradable polymer is a good relief in this era and its utility in diabetic patients will be a major advantage for them. Methods 334 patients with diabetes mellitus and requiring angioplasty, implanted with BioMatrix stent were followed at 1, 6, 12 and 24 months who entered in a multicenter registry in India. We analyzed the incidence of major adverse cardiac events (MACE) and stent thrombosis (ST) at 1, 6, 12 and 24 months. Results The mean age was 58.71 ± 9.2 years, 81% were males, comorbidity index was 1.6 ± 1.02, and 59.1% presented with acute coronary syndrome. The incidence of adverse event rates was: MACE 1.27%. There were no incidences of myocardial infarction (MI) and target vessel revascularization (TVR). Definite stent thrombosis occurred only in 2 patients. Conclusion In this registry of diabetic population treated with BioMatrixTM-Biolimus A9TM eluting stent (BioMatrix), the reported incidence of MACE and ST were much lower than previously published results. The 1- and 2-year follow-up result supports favorable clinical outcomes of using BioMatrix stents as a suitable alternative to contemporary DES available during PCI in diabetic patients. PMID:24206882

[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.

Burden and spectrum of disease in people with diabetes in Tonga

PubMed Central

Viney, K.; Roseveare, C.; Colaguiri, R.; Marais, B. J.

2014-01-01

Setting: National Diabetes Centre, Tonga. Objective: To describe the diabetes patient profile and disease spectrum, assess the impact of diabetic care and evaluate diabetes-attributable adverse outcomes. Design: Retrospective descriptive study of patients registered in the National Diabetes Registry from its inception in May 2004 to 2012, and review of the National Deaths Registry (2011–2012). Results: Of 4653 patients with diabetes mellitus (DM) identified, 95.8% had type 2 DM, 0.2% type 1, 1.2% gestational DM and 2.9% pre-DM. Of the 4409 patients with type 2 DM, 64.7% were female, 82.7% were aged ⩾40 years, 25.3% had hypertension and 53.3% were obese. Among those in care for >2 years, no positive impact on body mass index or glycosylated haemoglobin could be demonstrated, but there was significant improvement in hypertension control. Morbidity included lower limb amputations in 272 (6.1%) patients. DM was listed as a contributory cause of death due to sepsis (15/30, 50.0%), kidney failure (16/28, 57.1%), stroke (7/16, 43.8%) and ischaemic heart disease (20/59, 33.9%). Conclusion: DM was associated with high levels of morbidity and mortality. DM care improved hypertension control, but had little impact on other comorbid conditions. Enhanced monitoring and greater patient involvement should improve care; creative strategies are required to prevent and reduce obesity. PMID:26477287

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.

Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data.

PubMed

Andrew, Nadine E; Sundararajan, Vijaya; Thrift, Amanda G; Kilkenny, Monique F; Katzenellenbogen, Judith; Flack, Felicity; Gattellari, Melina; Boyd, James H; Anderson, Phil; Grabsch, Brenda; Lannin, Natasha A; Johnston, Trisha; Chen, Ying; Cadilhac, Dominique A

2016-10-01

To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry. We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised. Time from first application to receipt of data was more than two years for most state data-sets. Several challenges were unique to linkages involving identifiable data from a non-government clinical registry. Concerns about consent, the re-identification of data, duality of data custodian roles and data ownership were raised. Requirements involved the development of data flow methods, separating roles and multiple governance and ethics approvals. Approval to link death data presented the fewest barriers. To our knowledge, this is the first time in Australia that person-level data from a clinical quality registry has been linked to hospital and mortality data across multiple Australian jurisdictions. Implications for Public Health: The administrative load of obtaining linked data makes projects such as this burdensome but not impossible. An improved national centralised strategy for data linkage in Australia is urgently needed. © 2016 Public Health Association of Australia.

Diabetes Care Program of Nova Scotia: Celebrating 25 Years of Improving Diabetes Care in Nova Scotia.

PubMed

Payne, Jennifer I; Dunbar, Margaret J; Talbot, Pamela; Tan, Meng H

2018-06-01

The Diabetes Care Program of Nova Scotia (DCPNS)'s mission is "to improve, through leadership and partnerships, the health of Nova Scotians living with, affected by, or at risk of developing diabetes." Working together with local, provincial and national partners, the DCPNS has improved and standardized diabetes care in Nova Scotia over the past 25 years by developing and deploying a resourceful and collaborative program model. This article describes the model and highlights its key achievements. With balanced representation from frontline providers through to senior decision makers in health care, the DCPNS works across the age continuum, supporting the implementation of national clinical practice guidelines and, when necessary, developing provincial guidelines to meet local needs. The development and implementation of standardized documentation and data collection tools in all diabetes centres created a robust opportunity for the development and expansion of the DCPNS registry. This registry provides useful clinical and statistical information to staff, providers within the circle of care, management and senior leadership. Data are used to support individual care, program planning, quality improvement and business planning at both the local and the provincial levels. The DCPNS supports the sharing of new knowledge and advances through continuous education for providers. The DCPNS's ability to engage diabetes educators and key physician champions has ensured balanced perspectives in the creation of tools and resources that can be effective in real-world practice. The DCPNS has evolved to become an illustrative example of the chronic care model in action. Copyright © 2017 Diabetes Canada. Published by Elsevier Inc. All rights reserved.

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.

Sirolimus eluting stent (Cypher) in patients with diabetes mellitus: results from the German Cypher Stent Registry.

PubMed

Weber, Frank D; Schneider, Henrik; Wiemer, Marcus; Pfannebecker, Thomas; Tebbe, Ulrich; Hamm, Christian W; Senges, Jochen; Schneider, Steffen; Nienaber, Christoph A

2008-02-01

Patients with diabetes mellitus (DM) undergoing percutaneous coronary intervention (PCI) are at increased risk for adverse outcomes. The use of sirolimus eluting stents (SES) has been shown to improve outcomes in diabetic patients. Since results from randomized trials were derived from selected patients scientific scrutiny under real world conditions is necessary. 1,948 patients with DM and 4,707 patients without DM were included in the German Cypher Registry, a post-marketing survey of use of SES in Germany. In >99% of entry cases a structured clinical follow-up was completed. By angiographic criteria severity of coronary artery disease was higher in diabetic patients compared to non-diabetics. However, procedural success and in-hospital complication rates were comparable between DM- and non-DM-patients. 6 months MACE rate in the DM group was significantly higher than in the non-DM group (16.4% vs. 13.0%) but lower than expected from historical data with the use of bare metal stents (BMS). The results with SES in diabetics are encouraging but DM remains a risk factor for poor outcome of PCI. No statement is justified whether the treatment of diabetics with SES is at least as safe as bypass surgery. This intriguing question has to be answered in a direct randomized head-to-head comparison with state of the art surgery.

Management of hypertension and diabetes mellitus by cardiovascular and endocrine physicians: a China registry.

PubMed

Song, Jie; Sheng, Chang-Sheng; Huang, Qi-Fang; Li, Li-Hua; Ma, Chang-Sheng; Guo, Xiao-Hui; Ji, Li-Nong; Wang, Ji-Guang

2016-08-01

We investigated hypertension and diabetes mellitus in two management settings, namely cardiology and endocrinology, and their associations with albuminuria while accounting for the management of these two diseases. Our multicentre registry included patients (≥20 years) seen for hypertension in cardiology or for diabetes mellitus in endocrinology. We administered a questionnaire and measured blood pressure, glycosylated haemoglobin A1c and albuminuria. Presence of both hypertension and diabetes was observed in 32.9% of hypertensive patients in cardiology (n = 1291) and 58.9% of diabetic patients in endocrinology (n = 1168). When both diseases were present, the use of combination antihypertensive therapy [odds ratio (OR) 0.31, P < 0.0001] and inhibitors of the renin-angiotensin system (OR 0.66, P = 0.0009) was less frequent in endocrinology than cardiology, and the use of combination antidiabetic therapy (OR 0.16, P < 0.0001) was less frequent in cardiology than endocrinology. The control of hypertension and diabetes, however, was not different between the two management settings (P ≥ 0.21), regardless of the therapeutic target (SBP/DBP < 140/90 or 130/80 mmHg and glycosylated haemoglobin A1c <7.0 or 6.5%). The prevalence of albuminuria was higher (P ≤ 0.02) in the presence of both diseases (23.3%) than those with either hypertension (12.6%) or diabetes alone (15.9%). Hypertension and diabetes mellitus were often jointly present, especially in the setting of endocrinology. The management was insufficient on the use of combination antihypertensive therapy and inhibitors of the renin-angiotensin system in endocrinology and for combination antidiabetic therapy in cardiology, indicating a need for more intensive management and better control of both clinical conditions.

Management of hypertension and diabetes mellitus by cardiovascular and endocrine physicians: a China registry

PubMed Central

Song, Jie; Sheng, Chang-Sheng; Huang, Qi-Fang; Li, Li-Hua; Ma, Chang-Sheng; Guo, Xiao-Hui; Ji, Li-Nong; Wang, Ji-Guang

2016-01-01

Objective: We investigated hypertension and diabetes mellitus in two management settings, namely cardiology and endocrinology, and their associations with albuminuria while accounting for the management of these two diseases. Methods: Our multicentre registry included patients (≥20 years) seen for hypertension in cardiology or for diabetes mellitus in endocrinology. We administered a questionnaire and measured blood pressure, glycosylated haemoglobin A1c and albuminuria. Results: Presence of both hypertension and diabetes was observed in 32.9% of hypertensive patients in cardiology (n = 1291) and 58.9% of diabetic patients in endocrinology (n = 1168). When both diseases were present, the use of combination antihypertensive therapy [odds ratio (OR) 0.31, P < 0.0001] and inhibitors of the renin–angiotensin system (OR 0.66, P = 0.0009) was less frequent in endocrinology than cardiology, and the use of combination antidiabetic therapy (OR 0.16, P < 0.0001) was less frequent in cardiology than endocrinology. The control of hypertension and diabetes, however, was not different between the two management settings (P ≥ 0.21), regardless of the therapeutic target (SBP/DBP < 140/90 or 130/80 mmHg and glycosylated haemoglobin A1c <7.0 or 6.5%). The prevalence of albuminuria was higher (P ≤ 0.02) in the presence of both diseases (23.3%) than those with either hypertension (12.6%) or diabetes alone (15.9%). Conclusion: Hypertension and diabetes mellitus were often jointly present, especially in the setting of endocrinology. The management was insufficient on the use of combination antihypertensive therapy and inhibitors of the renin–angiotensin system in endocrinology and for combination antidiabetic therapy in cardiology, indicating a need for more intensive management and better control of both clinical conditions. PMID:27270188

Impact of diabetes on 12-month outcomes following coronary artery bypass graft surgery: results from the ROSETTA-CABG Registry.

PubMed

Gitman, M R; Okrainec, Karen; Nguyen, Hiep; Duerr, Robert; Del Core, Michael; Fourchy, Dominique; Huynh, Thao; Lader, Ellis; Rogers, Felix J; Chaudry, M Rashid; Pilote, L; Eisenberg, Mark J

2005-11-01

Diabetes mellitus is associated with poorer long-term outcomes following coronary artery bypass graft (CABG) surgery. However, little is known about the impact of diabetes mellitus on outcomes during the first 12 months following CABG. To examine the relationship between diabetes mellitus and outcomes during the 12 months following CABG. The Routine versus Selective Exercise Treadmill Testing after Coronary Artery Bypass Grafting (ROSETTA-CABG) Registry is a prospective, multicentre study examining the use of functional testing after CABG surgery. A total of 398 patients who were enrolled in the ROSETTA-CABG Registry were examined. Diabetic status was defined by medication use at discharge. Only patients undergoing a first successful CABG (all ischemic areas thought to be revascularized) were included. Among the 398 patients, 37 (9.3%) were receiving insulin, 67 (16.8%) were receiving oral hypoglycemic agents, and 294 (73.9%) were not receiving insulin or oral hypoglycemic agents. Insulin-treated patients had a higher 12-month incidence of composite clinical events consisting of readmission for unstable angina, myocardial infarction or death than did oral hypoglycemic-treated patients and nondiabetic patients (21.6% versus 4.5% and 6.0%, respectively; P=0.0003). Insulin-treated patients were also more likely to undergo repeat cardiac catheterization than were oral hypoglycemic-treated patients and nondiabetic patients (18.9% versus 8.8% and 7.9%, respectively; P=0.03). After controlling for other variables, use of insulin was independently associated with a composite of adverse clinical events (OR 3.80, 95% CI 1.5 to 9.6, P=0.005). During the 12-month period after a successful CABG, insulin-treated patients had a higher rate of adverse cardiac events than did patients receiving oral hypoglycemic agents and nondiabetic patients. These results suggest that diabetic patients may benefit from more aggressive surveillance during the first year after CABG surgery.

High rate of hypoglycemia in 6770 type 2 diabetes patients with comorbid dementia: A multicenter cohort study on 215,932 patients from the German/Austrian diabetes registry.

PubMed

Prinz, Nicole; Stingl, Julia; Dapp, Albrecht; Denkinger, Michael D; Fasching, Peter; Jehle, Peter M; Merger, Sigrun; Mühldorfer, Steffen; Pieper, Urte; Schuler, Andreas; Zeyfang, Andrej; Holl, Reinhard W

2016-02-01

Dementia and type 2 diabetes (T2D) are two major phenomena in older people. To compare anti-hyperglycemic therapy and diabetes-related comorbidities between elderly T2D patients with or without comorbid dementia. 215,932 type 2 diabetes patients aged ≥ 40 years (median [Q1;Q3]: 70.4 [61.2;77.7] years) from the standardized, multicenter German/Austrian diabetes patient registry, DPV, were studied. To identify patients with comorbid dementia, the registry was searched by ICD-10 codes, DSM-IV/-5 codes, respective search terms and/or disease-specific medication. For group comparisons, multiple hierarchic regression modeling with adjustments for age, sex, and duration of diabetes was applied. 3.1% (n=6770; 57% females) of the eligible T2D patients had clinically recognized comorbid dementia. After adjustment for demographics, severe hypoglycemia (insulin group: 14.8 ± 0.6 vs. 10.4 ± 0.2 events per 100 patient-years, p<0.001), hypoglycemia with coma (insulin group: 7.6 ± 0.4 vs. 3.9 ± 0.1 events per 100 patient-years, p<0.001), depression (9.9 vs. 4.7%, p<0.001), hypertension (74.7 vs. 72.2%, p<0.001), stroke (25.3 vs. 6.5%, p<0.001), diabetic foot syndrome (6.0 vs. 5.2%, p=0.004), and microalbuminuria (34.7 vs. 32.2%, p<0.001) were more common in dementia patients compared to T2D without dementia. Moreover, patients with dementia received insulin therapy more frequently (59.3 vs. 54.7%, p<0.001), but metabolic control (7.7 ± 0.1 vs. 7.7 ± 0.1%) was comparable to T2D without dementia. In T2D with dementia, higher rates of hypoglycemia and other diabetes-related comorbidities were observed. Hence, the risks of a glucocentric and intense diabetes management with insulin and a focus on tight glycemic control without considering other factors may outweigh the benefits in elderly T2D patients with comorbid dementia. Copyright © 2015 Elsevier Ireland 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.

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

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

PubMed

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

2015-12-01

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

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.

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.

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...

A Web-Based Interactive Diabetes Registry for Health Care Management and Planning in Saudi Arabia

PubMed Central

Youssef, Amira M; Subhani, Shazia N; Ahmad, Najlaa A; Al-Sharqawi, Ahmad H; Ibrahim, Heba M

2013-01-01

Background Worldwide, eHealth is a rapidly growing technology. It provides good quality health services at lower cost and increased availability. Diabetes has reached an epidemic stage in Saudi Arabia and has a medical and economic impact at a countrywide level. Data are greatly needed to better understand and plan to prevent and manage this medical problem. Objective The Saudi National Diabetes Registry (SNDR) is an electronic medical file supported by clinical, investigational, and management data. It functions as a monitoring tool for medical, social, and cultural bases for primary and secondary prevention programs. Economic impact, in the form of direct or indirect cost, is part of the registry’s scope. The registry’s geographic information system (GIS) produces a variety of maps for diabetes and associated diseases. In addition to availability and distribution of health facilities in the Kingdom, GIS data provide health planners with the necessary information to make informed decisions. The electronic data bank serves as a research tool to help researchers for both prospective and retrospective studies. Methods A Web-based interactive GIS system was designed to serve as an electronic medical file for diabetic patients retrieving data from medical files by trained registrars. Data was audited and cleaned before it was archived in the electronic filing system. It was then used to produce epidemiologic, economic, and geographic reports. A total of 84,942 patients were registered from 2000 to 2012, growing by 10% annually. Results The SNDR reporting system for epidemiology data gives better understanding of the disease pattern, types, and gender characteristics. Part of the reporting system is to assess quality of health care using different parameters, such as HbA1c, that gives an impression of good diabetes control for each institute. Economic reports give accurate cost estimation of different services given to diabetic patients, such as the annual insulin

Status of national diabetes programmes in the Americas.

PubMed Central

White, F.; Nanan, D.

1999-01-01

Reported are the responses in the latter half of 1997 of all ministries of health in the Region of the Americas to the Declaration of the Americas on Diabetes, which was adopted by the Directing Council of the Pan American Health Organization (PAHO) in 1996 as a basis for national programme development in diabetes. The short-term targets were the designation of national focal points, the preparation of national estimates of the disease burden, and the development and implementation of national strategies and plans to deal with diabetes. The survey found that most countries recognized diabetes as a significant public health problem. In terms of global relevance, a number of lessons have been learned from this exercise: the role of broadly based participation in gaining recognition at the national health policy level; the wide acceptance of an integrated programme model; the relevance of process-related targets to achieve short-term success; and the critical role of having a designated focal point within the managerial approach. PMID:10680245

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.

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/

Improving diabetes population management efficiency with an informatics solution.

PubMed

Zai, Adrian; Grant, Richard; Andrews, Carl; Yee, Ronnie; Chueh, Henry

2007-10-11

Despite intensive resource use for diabetes management in the U.S., our care continues to fall short of evidence-based goals, partly due to system inefficiencies. Diabetes registries are increasingly being utilized as a critical tool for population level disease management by providing real-time data. Since the successful adoption of a diabetes registry depends on how well it integrates with disease management workflows, we optimized our current diabetes management workflow and designed our registry application around it.

Structured personal care of type 2 diabetes: a 19 year follow-up of the study Diabetes Care in General Practice (DCGP).

PubMed

Hansen, L J; Siersma, V; Beck-Nielsen, H; de Fine Olivarius, N

2013-06-01

This study is a 19 year observational follow-up of a pragmatic open multicentre cluster-randomised controlled trial of 6 years of structured personal diabetes care starting from diagnosis. A total of 1,381 patients aged ≥ 40 years and newly diagnosed with type 2 diabetes were followed up in national registries for 19 years. Clinical follow-up was at 6 and 14 years after diabetes diagnosis. The original 6 year intervention included regular follow-up and individualised goal setting, supported by prompting of doctors, clinical guidelines, feedback and continuing medical education (ClinicalTrials.gov NCT01074762). The registry-based endpoints were: incidence of any diabetes-related endpoint; diabetes-related death; all-cause mortality; myocardial infarction (MI); stroke; peripheral vascular disease; and microvascular disease. At 14 year clinical follow-up, group differences in risk factors from the 6 year follow-up had levelled out, although the prevalence of (micro)albuminuria and level of triacylglycerols were lower in the intervention group. During 19 years of registry-based monitoring, all-cause mortality was not different between the intervention and comparison groups (58.9 vs 62.3 events per 1,000 patient-years, respectively; for structured personal care, HR 0.94, 95% CI 0.83, 1.08, p = 0.40), but a lower risk emerged for fatal and non-fatal MI (27.3 vs 33.5, HR 0.81, 95% CI 0.68, 0.98, p = 0.030) and any diabetes-related endpoint (69.5 vs 82.1, HR 0.83, 95% CI 0.72, 0.97, p = 0.016). These differences persisted after extensive multivariable adjustment. In concert with features such as prompting, feedback, clinical guidelines and continuing medical education, individualisation of goal setting and drug treatment may safely be applied to treat patients newly diagnosed with type 2 diabetes to lower the risk of diabetes complications.

Design, development and deployment of a Diabetes Research Registry to facilitate recruitment in clinical research.

PubMed

Tan, Meng H; Bernstein, Steven J; Gendler, Stephen; Hanauer, David; Herman, William H

2016-03-01

A major challenge in conducting clinical trials/studies is the timely recruitment of eligible subjects. Our aim is to develop a Diabetes Research Registry (DRR) to facilitate recruitment by matching potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their electronic health records (EHR). A committee with expertise in diabetes, quality improvement, information technology, and informatics designed and developed the DRR. Using a hybrid approach, we identified and consented patients interested in research, abstracted their EHRs to assess common eligibility criteria, and contacted them about their interest in participating in specific studies. Investigators submit their requests with study entry criteria to the DRR which then provides a list of potential subjects who may be directly contacted for their study. The DRR meets all local, regional and federal regulatory requirements. After 5 years, the DRR has over 5000 registrants. About 30% have type 1 diabetes and 70% have type 2 diabetes. There are almost equal proportions of men and women. During this period, 31 unique clinical studies from 19 unique investigators requested lists of potential subjects for their studies. Eleven grant applications from 10 unique investigators used aggregated counts of potentially eligible subjects in their applications. The DRR matches potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their EHR. By providing large lists of potentially eligible study subjects quickly, the DRR facilitated recruitment in 31 clinical studies. Copyright © 2016 Elsevier Inc. All rights reserved.

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.

Effect of pretransplant diabetes on short-term outcomes after liver transplantation: a national cohort study.

PubMed

Hoehn, Richard S; Singhal, Ashish; Wima, Koffi; Sutton, Jeffrey M; Paterno, Flavio; Steve Woodle, E; Hohmann, Sam; Abbott, Daniel E; Shah, Shimul A

2015-07-01

We sought to analyse the effect of pretransplant diabetes on post-operative outcomes and resource utilization following liver transplantation. A retrospective cohort study was designed using a linkage between the University HealthSystem Consortium and Scientific Registry of Transplant Recipients databases. We identified 12 442 patients who underwent liver transplantation at 63 centres from 2007-2011 and separated cohorts of patients with diabetes (n = 2971; 24%) and without (n = 9471; 76%) at the time of transplant. We analysed transplant related outcomes and short-term survival. Diabetic recipients were more likely to be male (70% vs 67%), non-white (32% vs 26%), older (age ≥60; 41% vs 28%), and have a higher BMI (29 vs 27; P < 0.001). More diabetic patients were on haemodialysis (10% vs 7%), had cirrhosis caused by NASH (24% vs 9%; P < 0.001), and received liver allografts from older donors (≥ 60 years; 19% vs 15%) with a higher donor risk index (>1.49; 46% vs 42%; P < 0.001). Post-transplant, diabetic recipients had longer hospital length of stay (10 vs 9 days), higher peri-transplant mortality (5% vs 4%) and 30-day readmission rates (41% vs 37%), were less often discharged to home (83% vs 87%; P < 0.05), and had inferior graft and patient survival. Liver transplant was more expensive for type 1 vs type 2 diabetics ($105 078 vs $100 624, P < 0.001). Poorly controlled diabetic recipients were less likely discharged home following transplant (75% vs 82%, P < 0.01). This national study indicates that pretransplant diabetes is associated with inferior post-operative outcomes and increased resource utilization after liver transplantation. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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.

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.

Poor glycemic control in younger women attending Malaysian public primary care clinics: findings from adults diabetes control and management registry.

PubMed

Cheong, Ai Theng; Lee, Ping Yein; Sazlina, Shariff-Ghazali; Mohamad Adam, Bujang; Chew, Boon How; Mastura, Ismail; Jamaiyah, Haniff; Syed Alwi, Syed-Abdul-Rahman; Sri Wahyu, Taher; Nafiza, Mat-Nasir

2013-12-10

Women of reproductive age are a group of particular concern as diabetes may affect their pregnancy outcome as well as long-term morbidity and mortality. This study aimed to compare the clinical profiles and glycemic control of reproductive and non-reproductive age women with type 2 diabetes (T2D) in primary care settings, and to determine the associated factors of poor glycemic control in the reproductive age group women. This was a cross-sectional study using cases reported by public primary care clinics to the Adult Diabetes Control and Management registry from 1st January to 31st December 2009. All Malaysian women aged 18 years old and above and diagnosed with T2D for at least 1 year were included in the analysis. The target for glycemic control (HbA1c < 6.5%) is in accordance to the recommended national guidelines. Both univariate and multivariate approaches of logistic regression were applied to determine whether reproductive age women have an association with poor glycemic control. Data from a total of 30,427 women were analyzed and 21.8% (6,622) were of reproductive age. There were 12.5% of reproductive age women and 18.0% of non-reproductive age women that achieved glycemic control. Reproductive age group women were associated with poorer glycemic control (OR = 1.5, 95% CI = 1.2-1.8). The risk factors associated with poor glycemic control in the reproductive age women were being of Malay and Indian race, longer duration of diabetes, patients on anti-diabetic agents, and those who had not achieved the target total cholesterol and triglycerides. Women with T2D have poor glycemic control, but being of reproductive age was associated with even poorer control. Health care providers need to pay more attention to this group of patients especially for those with risk factors. More aggressive therapeutic strategies to improve their cardiometabolic control and pregnancy outcome are warranted.

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.

Bariatric surgery for diabetes: the International Diabetes Federation takes a position.

PubMed

Dixon, John B; Zimmet, Paul; Alberti, K George; Mbanya, Jean Claude; Rubino, Francesco

2011-12-01

Type 2 diabetes (T2D) and obesity are both complex and chronic medical disorders, each with an escalating worldwide prevalence. When obesity is severe, and/or available medical therapies fail to control the diabetes, bariatric surgery becomes a cost-effective therapy for T2D. When there are other major comorbidities and cardiovascular risk, the option of bariatric surgery becomes even more worthy of consideration. National guidelines for bariatric surgery need to be developed and implemented for people with T2D. With this in mind, the International Diabetes Federation convened a multidisciplinary working group to develop a position statement. The key recommendations cover describing those eligible for surgery and who should be prioritized, incorporating bariatric surgery into T2D treatment algorithms, performing surgery in centers with multidisciplinary teams that are experienced in the management of both obesity and diabetes, and developing bariatric surgery registries and reporting standards. © 2011 Ruijin Hospital, Shanghai Jiaotong University School of Medicine and Blackwell Publishing Asia Pty Ltd.

Severe Hypoglycemia and Diabetic Ketoacidosis among Youth with Type 1 Diabetes in the T1D Exchange Clinic Registry

PubMed Central

Cengiz, Eda; Xing, Dongyuan; Wong, Jenise C.; Wolfsdorf, Joseph I.; Haymond, Morey W.; Rewers, Arleta; Shanmugham, Satya; Tamborlane, William V.; Willi, Steven M.; Seiple, Diane L.; Miller, Kellee M.; DuBose, Stephanie N.; Beck, Roy W.

2014-01-01

Objective Severe hypoglycemia (SH) and diabetic ketoacidosis (DKA) are common serious acute complications of type 1 diabetes (T1D). The aim of this study was to determine the frequency of SH and DKA and identify factors related to their occurrence in the T1D Exchange pediatric and young adult cohort. Research Design and Methods The analysis included 13,487 participants in the T1D Exchange clinic registry aged 2-<26 years with T1D ≥2 years. Separate logistic regression models were used to evaluate the association of baseline demographic and clinical factors with the occurrence of SH or DKA in the prior 12 months. Results Non-White race, no private health insurance and lower household income were associated with higher frequencies of both SH and DKA (p<0.001). SH frequency was highest in children <6 years old (p=0.005), but across the age range, SH was not associated with HbA1c levels after controlling for other factors (p=0.72). DKA frequency was highest in adolescents (p<0.001) and associated with higher HbA1c (p<0.001). Conclusions Our data show that poor glycemic control increases the risk of DKA but does not protect against severe hypoglycemia in youth and young adults with type 1 diabetes. The high frequencies of SH and DKA observed in disadvantaged minorities with T1D highlight the need for targeted interventions and new treatment paradigms for patients in these high risk groups. PMID:23469984

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

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

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 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.

Diagnosing gestational diabetes mellitus in the Danish National Birth Cohort.

PubMed

Olsen, Sjurdur F; Houshmand-Oeregaard, Azedeh; Granström, Charlotta; Langhoff-Roos, Jens; Damm, Peter; Bech, Bodil H; Vaag, Allan A; Zhang, Cuilin

2017-05-01

The Danish National Birth Cohort (DNBC) contains comprehensive information on diet, lifestyle, constitutional and other major characteristics of women during pregnancy. It provides a unique source for studies on health consequences of gestational diabetes mellitus. Our aim was to identify and validate the gestational diabetes mellitus cases in the cohort. We extracted clinical information from hospital records for 1609 pregnancies included in the Danish National Birth Cohort with a diagnosis of diabetes during or before pregnancy registered in the Danish National Patient Register and/or from a Danish National Birth Cohort interview during pregnancy. We further validated the diagnosis of gestational diabetes mellitus in 2126 randomly selected pregnancies from the entire Danish National Birth Cohort. From the individual hospital records, an expert panel evaluated gestational diabetes mellitus status based on results from oral glucose tolerance tests, fasting blood glucose and Hb1c values, as well as diagnoses made by local obstetricians. The audit categorized 783 pregnancies as gestational diabetes mellitus, corresponding to 0.89% of the 87 792 pregnancies for which a pregnancy interview for self-reported diabetes in pregnancy was available. From the randomly selected group the combined information from register and interviews could correctly identify 96% (95% CI 80-99.9%) of all cases in the entire Danish National Birth Cohort population. Positive predictive value, however, was only 59% (56-61%). The combined use of data from register and interview provided a high sensitivity for gestational diabetes mellitus diagnosis. The low positive predictive value, however, suggests that systematic validation by hospital record review is essential not to underestimate the health consequences of gestational diabetes mellitus in future studies. © 2016 Nordic Federation of Societies of Obstetrics and Gynecology.

A national approach to diabetes foot risk stratification and foot care.

PubMed

Leese, G P; Stang, D; Pearson, D W

2011-08-01

The Scottish Diabetes Foot Action Group (SDG) has developed and introduced a national strategy plan for diabetic foot care across Scotland. This has involved the implementation of an evidence-based national foot screening and risk stratification programme that has already covered 61% of the population in just the first two years. Nationally agreed patient information foot leaflets and professional education material have been introduced, and a consensus for antibiotic use in the diabetic foot has been published. Information on multidisciplinary specialist foot services has been collected, indicating that 58% of Health Board areas have consultants with dedicated sessions in their job plan to a foot clinic, and 42% had integrated orthotic involvement. The SDG aims to increase these figures. Work has been undertaken to support local podiatry networks and improve communication between the specialist centre and the community. At a national level the SDG is working with Foot in Diabetes UK (FDUK) to recognize key podiatry skills by developing core competencies and a competency framework for the diabetes podiatrist and diabetes orthotist. The annual Scottish Diabetes Survey indicates some improvement in amputation rates with prevalence decreasing from 0.8% to 0.5%, and improved recording of foot ulceration at a national level. This national strategy has helped highlight the importance and difficulties facing diabetes foot care and should help to continue to improve the quality of care of people with diabetes who have foot-related problems.

Characterization of Tako-tsubo Cardiomyopathy in Spain: Results from the RETAKO National Registry.

PubMed

Núñez Gil, Iván J; Andrés, Mireia; Almendro Delia, Manuel; Sionis, Alessandro; Martín, Ana; Bastante, Teresa; Córdoba Soriano, Juan Gabriel; Linares Vicente, José A; González Sucarrats, Silvia; Sánchez-Grande Flecha, Alejandro

2015-06-01

The etiology and epidemiology of tako-tsubo cardiomyopathy remain uncertain. The symptoms of this condition are often similar to those of myocardial infarction and, although it usually has a good prognosis, it is not without complications. Our aim was to characterize this disease in our setting using a dedicated registry (Spanish REgistry for TAKOtsubo cardiomyopathy). The prospective registry included 202 incident patients in 23 hospitals from 2012 to 2013. The patients' clinical characteristics and analytical, echocardiographic, and imaging results were recorded, as were the events during follow-up. Patients were included when the attending physician considered the case proven, and incidence was calculated relative to the catheterizations requested for a presumptive diagnosis of acute coronary syndrome. The patients were predominantly women (90%), with a mean age of 70 years, and many had cardiovascular risk factors, such as hypertension (67%), dyslipidemia (41%), diabetes mellitus (15%), and smoking (15%). The incidence of tako-tsubo cardiomyopathy was 1.2%, and there was no clear weekly or seasonal distribution pattern. Chest pain was the predominant symptom, a triggering factor (emotional, physical, or both) was present in 72%, and most patients consulted within the first 6h after symptom onset. The median duration of hospitalization was 7 days. There were heart failure symptoms in 34.0%, arrhythmia in 26.7%, and 2.4% of patients died. The incidence of tako-tsubo cardiomyopathy is low. This disease primarily affects postmenopausal women, and occurs after a situation of emotional stress in more than half of affected individuals. It is characterized by anginal pain, shows no seasonal distribution, and has a good prognosis, although it is not without morbidity and mortality. Copyright © 2014 Sociedad Española de Cardiología. Published by Elsevier España, S.L.U. All rights reserved.

Pooled analysis of the CONFIRM registries: safety outcomes in diabetic patients treated with orbital atherectomy for peripheral artery disease.

PubMed

Lee, Michael S; Yang, Tae; Adams, George

2014-04-01

To compare the acute outcomes of orbital atherectomy treatment in diabetic vs. non-diabetic patients with peripheral artery disease (PAD). The CONFIRM registry series contained 1842 diabetic patients (1111 men; mean age 70.6±10.2 years) with 2819 lesions and 1247 non-diabetic patients (732 men; mean age 72.9±10.7 years) with 1885 lesions. The composite rate of procedure-related complications, including dissection, perforation, slow flow, vessel closure, spasm, embolism, and thrombus formation, was analyzed for the diabetic and non-diabetic groups. Diabetics were younger but had a higher prevalence of coronary artery disease (p<0.001), renal disease (p<0.001), hypertension (p<0.001), hyperlipidemia (p<0.001), and lower ankle-brachial index scores (p=0.007). Diabetics had more severe PAD (Rutherford category 4-6; p<0.001), longer lesions (p<0.001), more infrapopliteal lesions (58% vs. 46%, p<0.001), and more lesions with severe and moderate calcium (86% vs. 78%, p<0.001). Diabetic and non-diabetic patients had the same (21.8%) composite rate of procedure-related complications, as well as similar rates of dissection (11.4% vs. 10.8%, p=0.68), embolism (2.2% vs. 2.4%, p=0.67), and thrombus formation (1.3% vs. 1.1%, p=0.75). However, diabetics had lower rates of perforation (0.5% vs. 1.1%, p=0.03) and spasm (5.5% vs. 7.6%, p=0.005), but a higher rate of slow flow (5.0% vs. 3.5%, p=0.02) and a tendency toward increased vessel closure (1.7% vs. 0.9%, p=0.06). Plaque modification with orbital atherectomy resulted in similar low procedure-related complication rates in both the diabetic and non-diabetic groups, despite diabetics having more unfavorable baseline clinical and lesion characteristics. This study suggests that orbital atherectomy is a safe and effective treatment modality in both the diabetic and the non-diabetic populations.

Successful implementation of diabetes audits in Australia: the Australian National Diabetes Information Audit and Benchmarking (ANDIAB) initiative.

PubMed

Lee, A S; Colagiuri, S; Flack, J R

2018-04-06

We developed and implemented a national audit and benchmarking programme to describe the clinical status of people with diabetes attending specialist diabetes services in Australia. The Australian National Diabetes Information Audit and Benchmarking (ANDIAB) initiative was established as a quality audit activity. De-identified data on demographic, clinical, biochemical and outcome items were collected from specialist diabetes services across Australia to provide cross-sectional data on people with diabetes attending specialist centres at least biennially during the years 1998 to 2011. In total, 38 155 sets of data were collected over the eight ANDIAB audits. Each ANDIAB audit achieved its primary objective to collect, collate, analyse, audit and report clinical diabetes data in Australia. Each audit resulted in the production of a pooled data report, as well as individual site reports allowing comparison and benchmarking against other participating sites. The ANDIAB initiative resulted in the largest cross-sectional national de-identified dataset describing the clinical status of people with diabetes attending specialist diabetes services in Australia. ANDIAB showed that people treated by specialist services had a high burden of diabetes complications. This quality audit activity provided a framework to guide planning of healthcare services. © 2018 Diabetes UK.

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

The Diabetes Educator and the Diabetes Self-management Education Engagement: The 2015 National Practice Survey.

PubMed

Sherr, Dawn; Lipman, Ruth D

2015-10-01

The National Practice Study (NPS) is conducted biannually to assess current diabetes education practices in the United States with the goal of understanding current trends in the work in which diabetes educators engage. The 2015 NPS contained 54 questions about the individuals providing diabetes education, people with diabetes participating in education, and programs providing the education. The survey was sent electronically to approximately 21 975 people who were members of the American Association of Diabetes Educators (AADE) or who were Certified Diabetes Educators with the National Certification Board for Diabetes Educators but were not currently AADE members. In addition, both the AADE and the National Certification Board for Diabetes Educators promoted participation in the NPS via social media. The combination of efforts resulted in completion of the survey by 4855 respondents. Testing was completed with a significance level of 0.05 or 95% confidence. Diabetes educators continue to represent a diverse group of health care professionals-nurses (50%), dietitians (35%), pharmacists (6%), and others (6%). By far, the most commonly held credential for the specialty continues to be the Certified Diabetes Educator (86%), with only 5% of survey respondents indicating that they held the Board Certified-Advanced Diabetes Management credential. Diabetes educators are working with individuals across the diabetes continuum, as well as with people who do not have diabetes but have other chronic conditions. The data demonstrate that much of the diabetes educator's work with people with diabetes is beyond the first year of diagnosis. Diabetes educators are increasingly seen to be providing a broader array of the integrated AADE7 Self-Care Behaviors™. The specialty of diabetes educator continues to be populated by a professionally diverse workforce, meeting the needs of people across a wide spectrum. Diabetes educators can be found providing services in primary prevention

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.

Depression and diabetes distress in adults with type 2 diabetes: results from the Australian National Diabetes Audit (ANDA) 2016.

PubMed

Nanayakkara, Natalie; Pease, Anthony; Ranasinha, Sanjeeva; Wischer, Natalie; Andrikopoulos, Sofianos; Speight, Jane; de Courten, Barbora; Zoungas, Sophia

2018-05-18

This study explores the prevalence of, and factors associated with, likely depression and diabetes distress in adults with type 2 diabetes in a large, national sample. Australian National Diabetes Audit data were analysed from adults with type 2 diabetes attending 50 diabetes centres. The Brief Case find for Depression and Diabetes Distress Score 17 were administered to screen for likely depression and diabetes-related distress, respectively. A total of 2,552 adults with type 2 diabetes participated: (mean ± SD) age was 63 ± 13 years, diabetes duration was 12 ± 10 years, and HbA1c was 8 ± 2%. Twenty-nine percent of patients had likely depression, 7% had high diabetes distress, and 5% had both. Difficulty following dietary recommendations, smoking, forgetting medications, and diabetes distress were all associated with greater odds of depression whereas higher own health rating was associated with lower odds (all p < 0.02). Female gender, increasing HbA1c, insulin use, difficulty following dietary recommendations and depression were all associated with greater odds of diabetes distress & older age, higher own health rating and monitoring blood glucose levels as recommended were associated with lower odds (all p < 0.04). Depression was associated with sub-optimal self-care, while diabetes distress was associated with higher HbA1c and sub-optimal self-care.

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.

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...

The SEARCH for Diabetes in Youth Study: Rationale, Findings, and Future Directions

PubMed Central

Hamman, Richard F.; Dabelea, Dana; D’Agostino, Ralph B.; Dolan, Lawrence; Imperatore, Giuseppina; Lawrence, Jean M.; Linder, Barbara; Marcovina, Santica M.; Mayer-Davis, Elizabeth J.; Pihoker, Catherine; Rodriguez, Beatriz L.; Saydah, Sharon

2014-01-01

The SEARCH for Diabetes in Youth (SEARCH) study was initiated in 2000, with funding from the Centers for Disease Control and Prevention and support from the National Institute of Diabetes and Digestive and Kidney Diseases, to address major knowledge gaps in the understanding of childhood diabetes. SEARCH is being conducted at five sites across the U.S. and represents the largest, most diverse study of diabetes among U.S. youth. An active registry of youth diagnosed with diabetes at age <20 years allows the assessment of prevalence (in 2001 and 2009), annual incidence (since 2002), and trends by age, race/ethnicity, sex, and diabetes type. Prevalence increased significantly from 2001 to 2009 for both type 1 and type 2 diabetes in most age, sex, and race/ethnic groups. SEARCH has also established a longitudinal cohort to assess the natural history and risk factors for acute and chronic diabetes-related complications as well as the quality of care and quality of life of persons with diabetes from diagnosis into young adulthood. Many youth with diabetes, particularly those from low-resourced racial/ethnic minority populations, are not meeting recommended guidelines for diabetes care. Markers of micro- and macrovascular complications are evident in youth with either diabetes type, highlighting the seriousness of diabetes in this contemporary cohort. This review summarizes the study methods, describes key registry and cohort findings and their clinical and public health implications, and discusses future directions. PMID:25414389

77 FR 43096 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Diabetes Mellitus...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-07-23

... meeting will focus on ``Diabetes, Dementia, and Alzheimer's Disease.'' Any member of the public interested... Diabetes and Digestive and Kidney Diseases; Notice of Diabetes Mellitus Interagency Coordinating Committee... Coordinating Committee, National Institute of Diabetes and Digestive and Kidney Diseases, 31 Center Drive...

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.

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.

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.

Epidemiology of diabetes in New Zealand: revisit to a changing landscape.

PubMed

Joshy, Grace; Simmons, David

2006-06-02

The aim of this review is to describe the evolution of the burden of diabetes, its risk factors and complications in New Zealand, and the current national strategies underway to tackle a condition likely to impact on the national ability to afford other health services. The MEDLINE database from 1990 was searched for New Zealand-specific diabetes studies. The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) Reports from 1990-2004 and Ministry of Health (MoH) publications and reports were also reviewed. Key contact people working in the field of diabetes care in every district health board (DHB) were contacted, and information on current initiatives for diabetes control and prevention were collected. The prevalence of diabetes (known and undiagnosed), impaired glucose tolerance (IGT)/impaired fasting glucose (IFG) and gestational diabetes are tabulated by ethnic group. The latest New Zealand Health Survey (NZHS) result of known diabetes: European 2.9%, Maori 8%, Pacific 10.1%, Asian 8.4%. Diabetes risk factors have been examined and the reported rates have been compiled. Maori and Pacific people have a particularly high prevalence of diabetes risk factors (e.g. obesity, physical inactivity, insulin resistance, metabolic syndrome) compared with Europeans. The profile of diabetic patients in New Zealand has been summarised using publications on their clinical characteristics. The latest available data on ethnic specific clinical characteristics are a decade old. With the suboptimal participation in the Get Checked program: 63% Europeans/Others, 27% Maori, 92% Pacific (possibly overestimated) people in 2004, the results may not be representative. The burden of diabetes complications and diabetes related mortality has been reviewed. A high proportion of Maori and Pacific dialysis patients and new renal disease patients from the ANZDATA registry have diabetes comorbidity. The inadequacy of official statistics in New Zealand and the scarcity of indepth

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.

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.

Chronic kidney disease and diabetes in the national health service: a cross-sectional survey of the U.K. national diabetes audit.

PubMed

Hill, C J; Cardwell, C R; Patterson, C C; Maxwell, A P; Magee, G M; Young, R J; Matthews, B; O'Donoghue, D J; Fogarty, D G

2014-04-01

We investigated the prevalence of chronic kidney disease and attainment of therapeutic targets for HbA1c and blood pressure in a large U.K.-based diabetes population. The U.K. National Diabetes Audit provided data from 1 January 2007 to 31 March 2008. Inclusion criteria were a documented urinary albumin:creatinine ratio and serum creatinine. Patients were stratified according to chronic kidney disease stage and albuminuria status. Chronic kidney disease was defined as an estimated glomerular filtration rate < 60 ml min(-1) 1.73 m(-2) , albuminuria or both. The proportions of patients achieving nationally defined glycaemic and systolic blood pressure targets were determined. The cohort comprised 1,423,669 patients, of whom 868,616 (61%) met inclusion criteria. Of the patients analysed, 92.2% had Type 2 diabetes. A higher proportion of people with Type 2 diabetes (42.3%) had renal dysfunction compared with those with Type 1 diabetes (32.4%). Achievement of systolic blood pressure and HbA1c targets was poor. Among people with Type 1 diabetes, 67.8% failed to achieve an HbA1c < 58 mmol/mol (7.5%). Of all people with diabetes, 37.8% failed to achieve a systolic blood pressure < 140 mmHg. Blood pressure control was poor in advanced chronic kidney disease. For example, mean (standard deviation) systolic blood pressure rose from 128.6 (15.4) mmHg among people with Type 1 diabetes and normal renal function to 141.0 (23.6) mmHg in those with chronic kidney disease stage 5 and macroalbuminuria. The high prevalence of chronic kidney disease and poor attainment of treatment targets highlights a large subset of the diabetes population at increased risk of cardiovascular mortality or progressive kidney disease. © 2013 The Authors. Diabetic Medicine © 2013 Diabetes UK.

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.

[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.

Obesity in Youth with Type 1 Diabetes in Germany, Austria, and the United States.

PubMed

DuBose, Stephanie N; Hermann, Julia M; Tamborlane, William V; Beck, Roy W; Dost, Axel; DiMeglio, Linda A; Schwab, Karl Otfried; Holl, Reinhard W; Hofer, Sabine E; Maahs, David M

2015-09-01

To examine the current extent of the obesity problem in 2 large pediatric clinical registries in the US and Europe and to examine the hypotheses that increased body mass index (BMI) z-scores (BMIz) are associated with greater hemoglobin A1c (HbA1c) and increased frequency of severe hypoglycemia in youth with type 1 diabetes (T1D). International (World Health Organization) and national (Centers for Disease Control and Prevention/German Health Interview and Examination Survey for Children and Adolescents) BMI references were used to calculate BMIz in participants (age 2-<18 years and ≥ 1 year duration of T1D) enrolled in the T1D Exchange (n = 11,435) and the Diabetes Prospective Follow-up (n = 21,501). Associations between BMIz and HbA1c and severe hypoglycemia were assessed. Participants in both registries had median BMI values that were greater than international and their respective national reference values. BMIz was significantly greater in the T1D Exchange vs the Diabetes Prospective Follow-up (P < .001). After stratification by age-group, no differences in BMI between registries existed for children 2-5 years, but differences were confirmed for 6- to 9-, 10- to 13-, and 14- to 17-year age groups (all P < .001). Greater BMIz were significantly related to greater HbA1c levels and more frequent occurrence of severe hypoglycemia across the registries, although these associations may not be clinically relevant. Excessive weight is a common problem in children with T1D in Germany and Austria and, especially, in the US. Our data suggest that obesity contributes to the challenges in achieving optimal glycemic control in children and adolescents with T1D. Copyright © 2015 Elsevier Inc. 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.

Drug utilization, safety, and effectiveness of exenatide, sitagliptin, and vildagliptin for type 2 diabetes in the real world: data from the Italian AIFA Anti-diabetics Monitoring Registry.

PubMed

Montilla, S; Marchesini, G; Sammarco, A; Trotta, M P; Siviero, P D; Tomino, C; Melchiorri, D; Pani, L

2014-12-01

In Italy, the reimbursed use of incretin mimetics and incretin enhancers was subject to enrollment of patients into a web-based system recording the general demographic and clinical data of patients. We report the utilization data of glucagon-like peptide 1 (GLP1) receptor agonists and dipeptidylpeptidase-4 (DPP4) inhibitors in clinical practice as recorded by the Italian Medicines Agency (AIFA) Monitoring Registry. From February 2008 to August 2010, 75,283 patients with type 2 diabetes were entered into the registry and treated with exenatide, sitagliptin, or vildagliptin. The treatment was administered to patients in a wide range of ages (≥75 years, n = 6125 cases), body mass index (BMI) (≥35 kg/m(2), n = 22,015), and metabolic control (HbA(1c) ≥ 11% ((96 mmol/mol), n = 3151). Overall, 1116 suspected adverse drug reactions were registered, including 12 cases of acute pancreatitis (six on exenatide). Hypoglycemic episodes mainly occurred in combination with sulfonylureas. Treatment discontinuation for the three drugs (logistic regression analysis) was negatively associated with the male gender and positively with baseline HbA1c, diabetes duration, and, limitedly to DPP-4 inhibitors, with BMI. Treatment discontinuation (including loss to follow-up, accounting for 21-26%) was frequent. Discontinuation for treatment failure occurred in 7.7% of cases (exenatide), 3.8% (sitagliptin), and 4.1% (vildagliptin), respectively, corresponding to 27-40% of all discontinuations, after excluding lost to follow-up. HbA1c decreased on average by 0.9-1.0% (9 mmol/mol). Body weight decreased by 3.5% with exenatide and by 1.0-1.5% with DPP-4 inhibitors. In the real world of Italian diabetes centers, prescriptions of incretins have been made in many cases outside the regulatory limits. Nevertheless, when appropriately utilized, incretins may grant results at least in line with pivotal trials. Copyright © 2014 Elsevier B.V. All rights reserved.

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

The 2017 Diabetes Educator and the Diabetes Self-Management Education National Practice Survey.

PubMed

Rinker, Joanne; Dickinson, Jane K; Litchman, Michelle L; Williams, Ann S; Kolb, Leslie E; Cox, Carla; Lipman, Ruth D

2018-06-01

Purpose The American Association of Diabetes Educators conducts the National Practice Survey (NPS) biennially to document current practice in diabetes education in the United States. The purpose of the study is to obtain insight about factors influencing the work of the diabetes educator. Method The 2017 NPS was comprised of 100 questions covering diabetes educator demographics, profile populations of people with diabetes, practice information, program accreditation, program curriculum, staffing, education delivery methods, data collection, and reporting. The basic survey consisted of 22 questions using branch logic, from which respondents were then directed to questions tailored to their particular practice setting, enabling them to answer only a relevant subset of the remaining questions. The web-based survey was sent to approximately 32 000 individuals who were either members of the American Association of Diabetes Educators (AADE) or Certified Diabetes Educators (CDE) with the National Certification Board for Diabetes Educators (NCBDE) but not AADE members. Weekly reminder e-mails were sent to recipients who had not yet responded. The outreach efforts resulted in the survey being completed by 4696 individuals, a 17% response rate yielding 95% confidence that these responses are within ±5% accuracy. Results Diabetes Self-Management Education and Support (DSMES) continues to be a field dominated by women (95%). Diabetes educators represent a diverse health care profession, with educators indicating most commonly that their primary discipline is nursing (48%), nutrition (38%), and pharmacy (7%). When asked about credentials, 82.6% indicated that they held a CDE, 3.8% held the Board Certified-Advanced Diabetes Management (BC-ADM) credential, and 16.5% held neither the CDE nor the BC-ADM. Nearly 75% characterized their role as a diabetes educator as providing direct patient care. DSMES continued to be provided in a varied array of settings to educationally

The SEARCH for Diabetes in Youth study: rationale, findings, and future directions.

PubMed

Hamman, Richard F; Bell, Ronny A; Dabelea, Dana; D'Agostino, Ralph B; Dolan, Lawrence; Imperatore, Giuseppina; Lawrence, Jean M; Linder, Barbara; Marcovina, Santica M; Mayer-Davis, Elizabeth J; Pihoker, Catherine; Rodriguez, Beatriz L; Saydah, Sharon

2014-12-01

The SEARCH for Diabetes in Youth (SEARCH) study was initiated in 2000, with funding from the Centers for Disease Control and Prevention and support from the National Institute of Diabetes and Digestive and Kidney Diseases, to address major knowledge gaps in the understanding of childhood diabetes. SEARCH is being conducted at five sites across the U.S. and represents the largest, most diverse study of diabetes among U.S. youth. An active registry of youth diagnosed with diabetes at age <20 years allows the assessment of prevalence (in 2001 and 2009), annual incidence (since 2002), and trends by age, race/ethnicity, sex, and diabetes type. Prevalence increased significantly from 2001 to 2009 for both type 1 and type 2 diabetes in most age, sex, and race/ethnic groups. SEARCH has also established a longitudinal cohort to assess the natural history and risk factors for acute and chronic diabetes-related complications as well as the quality of care and quality of life of persons with diabetes from diagnosis into young adulthood. Many youth with diabetes, particularly those from low-resourced racial/ethnic minority populations, are not meeting recommended guidelines for diabetes care. Markers of micro- and macrovascular complications are evident in youth with either diabetes type, highlighting the seriousness of diabetes in this contemporary cohort. This review summarizes the study methods, describes key registry and cohort findings and their clinical and public health implications, and discusses future directions. © 2014 by the American Diabetes Association. Readers may use this article as long as the work is properly cited, the use is educational and not for profit, and the work is not altered.

76 FR 11501 - National Institute of Diabetes and Digestive and Kidney Diseases

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-02

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

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.

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 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

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.

MyDiabetesMyWay: An Evolving National Data Driven Diabetes Self-Management Platform.

PubMed

Wake, Deborah J; He, Jinzhang; Czesak, Anna Maria; Mughal, Fezan; Cunningham, Scott G

2016-09-01

MyDiabetesMyWay (MDMW) is an award-wining national electronic personal health record and self-management platform for diabetes patients in Scotland. This platform links multiple national institutional and patient-recorded data sources to provide a unique resource for patient care and self-management. This review considers the current evidence for online interventions in diabetes and discusses these in the context of current and ongoing developments for MDMW. Evaluation of MDMW through patient reported outcomes demonstrates a positive impact on self-management. User feedback has highlighted barriers to uptake and has guided platform evolution from an education resource website to an electronic personal health record now encompassing remote monitoring, communication tools and personalized education links. Challenges in delivering digital interventions for long-term conditions include integration of data between institutional and personal recorded sources to perform big data analytics and facilitating technology use in those with disabilities, low digital literacy, low socioeconomic status and in minority groups. The potential for technology supported health improvement is great, but awareness and adoption by health workers and patients remains a significant barrier. © 2016 Diabetes Technology Society.

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

Marked improvements in outcomes of contemporary percutaneous coronary intervention in patients with diabetes mellitus.

PubMed

Freeman, Andrew M; Abbott, J Dawn; Jacobs, Alice K; Vlachos, Helen A; Selzer, Faith; Laskey, Warren K; Detre, Katherine M; Williams, David O

2006-12-01

We sought to determine if advances in percutaneous coronary intervention (PCI) are associated with better outcomes among patients with diabetes mellitus (DM). Patients with DM enrolled in the National Heart, Lung, and Blood Institute (NHLBI) early PTCA Registry (1985-1986) were compared to those in the subsequent contemporary Dynamic Registry (1999-2002) for in-hospital and one-year cardiovascular outcomes. The study population included 945 adults with DM, 325 from the PTCA Registry and 620 from the Dynamic Registry. Multivariable Cox regression models were built to estimate the risk of clinical events. Dynamic Registry patients were older, had more noncardiac comorbidities, and a lower mean ejection fraction (50.5% vs 57.8%, P < or = 0.001) compared to the PTCA Registry patients. The incidence of in-hospital mortality (1.9% vs 4.3%, P < or = 0.05), myocardial infarction (MI) (1.0% vs 7.4%, P Registry. The relative risk of death at 1 year was significantly less for patients in the Dynamic Registry (RR 0.56, 0.34; 0.92, P = 0.02). Although Dynamic Registry patients with diabetes had more advanced coronary disease, in-hospital and late adverse events were lower. A combination of the use of stents and an increase in adjunctive medical therapy are likely responsible for the observed improvements in outcomes in contemporary PCI.

Risk of specific congenital abnormalities in offspring of women with diabetes.

PubMed

Nielsen, G L; Nørgard, B; Puho, E; Rothman, K J; Sørensen, H T; Czeizel, A E

2005-06-01

To assess the extent to which the increased risk of congenital abnormalities seen in women with pre-gestational insulin-treated diabetes mellitus is unspecific or related to the embryology of specific organs. Cases with congenital abnormalities were identified in the population-based Hungarian Congenital Abnormality Registry from 1980 to 1996 with two newborn children without congenital abnormality selected from the National Birth Registry as controls. We adjusted for parity, maternal age, and use of antipsychotic drugs. Among cases we found 63/22,843 babies with maternal diabetes compared with 50/38,151 in the control group [adjusted prevalence odds ratio (POR) 2.1; 95% CI 1.5-3.1]. The association was strongest for the following congenital abnormalities: renal agenesis (POR: 14.8; 95% CI, 3.5-62.1), obstructive congenital abnormalities of the urinary tract (POR: 4.3; 95% CI, 1.3-13.9), cardiovascular congenital abnormalities (POR: 3.4; 95% CI, 2.0-5.7), and multiple congenital abnormalities (POR: 5.0; 95% CI, 2.4-10.2). These data indicate that pre-gestational maternal diabetes is associated with strong teratogenic effects on the kidney, urinary tract, and heart, and strongly associated with multiple congenital abnormalities. We found no material association between diabetes and spinal congenital abnormalities and limb deficiencies.

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.

Applying national survey results for strategic planning and program improvement: the National Diabetes Education Program.

PubMed

Griffey, Susan; Piccinino, Linda; Gallivan, Joanne; Lotenberg, Lynne Doner; Tuncer, Diane

2015-02-01

Since the 1970s, the federal government has spearheaded major national education programs to reduce the burden of chronic diseases in the United States. These prevention and disease management programs communicate critical information to the public, those affected by the disease, and health care providers. The National Diabetes Education Program (NDEP), the leading federal program on diabetes sponsored by the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), uses primary and secondary quantitative data and qualitative audience research to guide program planning and evaluation. Since 2006, the NDEP has filled the gaps in existing quantitative data sources by conducting its own population-based survey, the NDEP National Diabetes Survey (NNDS). The NNDS is conducted every 2–3 years and tracks changes in knowledge, attitudes and practice indicators in key target audiences. This article describes how the NDEP has used the NNDS as a key component of its evaluation framework and how it applies the survey results for strategic planning and program improvement. The NDEP's use of the NNDS illustrates how a program evaluation framework that includes periodic population-based surveys can serve as an evaluation model for similar national health education programs.

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.

Increased prevalence of diabetes mellitus and the metabolic syndrome in patients with primary aldosteronism of the German Conn's Registry.

PubMed

Hanslik, Gregor; Wallaschofski, Henri; Dietz, Anna; Riester, Anna; Reincke, Martin; Allolio, Bruno; Lang, Katharina; Quack, Ivo; Rump, Lars C; Willenberg, Holger S; Beuschlein, Felix; Quinkler, Marcus; Hannemann, Anke

2015-11-01

Abnormalities in glucose homeostasis have been described in patients with primary aldosteronism (PA) but most studies show inconsistent results. Therefore, we aimed to compare the prevalence of type 2 diabetes mellitus and metabolic syndrome (MetS) in newly diagnosed PA patients to a matched control cohort of the background population. In total, 305 PA patients of the prospective German Conn's Registry were compared to the population-based Study of Health In Pomerania (SHIP1; n=2454). A 1:1 match regarding sex, age, and BMI resulted in 269 matched pairs regarding type 2 diabetes and 183 matched pairs regarding MetS. Of the total, 153 PA patients underwent oral glucose tolerance testing (OGTT) at diagnosis and 38 PA patients were reevaluated at follow-up. Type 2 diabetes and MetS were significantly more frequent in PA patients than in the control population (17.2% vs 10.4%, P=0.03; 56.8% vs 44.8%, P=0.02 respectively). Also, HbA1c levels were higher in PA patients than in controls (P<0.01). Of the total, 35.3% of non-diabetic PA patients showed an abnormal OGTT (¼ newly diagnosed type 2 diabetes and ¾ impaired glucose tolerance). PA patients with an abnormal OGTT at baseline presented with significantly improved 2 h OGTT glucose (P=0.01) at follow-up. We detected a negative correlation between 2 h OGTT glucose levels and serum potassium (P<0.01). Type 2 diabetes and MetS are more prevalent in patients with PA than in controls matched for sex, age, BMI, and blood pressure. This may explain in part the increased cardiovascular disease morbidity and mortality in PA patients. © 2015 European Society of Endocrinology.

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

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

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…

Depressive symptoms in youth with type 1 or type 2 diabetes: Results of the Pediatric Diabetes Consortium screening assessment of depression in diabetes study

USDA-ARS?s Scientific Manuscript database

To evaluate the frequency of depressive symptoms and the diagnosis and management of depression in youth with type 1 diabetes (T1D) and type 2 diabetes (T2D) enrolled in the Pediatric Diabetes Consortium T1D and T2D registries. The Children's Depression Inventory (CDI) 2 Self-Report (Short) version ...

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

Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: a mixed methods study.

PubMed

Oster, Richard T; Grier, Angela; Lightning, Rick; Mayan, Maria J; Toth, Ellen L

2014-10-19

We used an exploratory sequential mixed methods approach to study the association between cultural continuity, self-determination, and diabetes prevalence in First Nations in Alberta, Canada. We conducted a qualitative description where we interviewed 10 Cree and Blackfoot leaders (members of Chief and Council) from across the province to understand cultural continuity, self-determination, and their relationship to health and diabetes, in the Alberta First Nations context. Based on the qualitative findings, we then conducted a cross-sectional analysis using provincial administrative data and publically available data for 31 First Nations communities to quantitatively examine any relationship between cultural continuity and diabetes prevalence. Cultural continuity, or "being who we are", is foundational to health in successful First Nations. Self-determination, or "being a self-sufficient Nation", stems from cultural continuity and is seriously compromised in today's Alberta Cree and Blackfoot Nations. Unfortunately, First Nations are in a continuous struggle with government policy. The intergenerational effects of colonization continue to impact the culture, which undermines the sense of self-determination, and contributes to diabetes and ill health. Crude diabetes prevalence varied dramatically among First Nations with values as low as 1.2% and as high as 18.3%. Those First Nations that appeared to have more cultural continuity (measured by traditional Indigenous language knowledge) had significantly lower diabetes prevalence after adjustment for socio-economic factors (p =0.007). First Nations that have been better able to preserve their culture may be relatively protected from diabetes.

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.

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.

Teenage girls with type 1 diabetes have poorer metabolic control than boys and face more complications in early adulthood.

PubMed

Samuelsson, Ulf; Anderzén, Johan; Gudbjörnsdottir, Soffia; Steineck, Isabelle; Åkesson, Karin; Hanberger, Lena

2016-07-01

To compare metabolic control between males and females with type 1 diabetes during adolescence and as young adults, and relate it to microvascular complications. Data concerning 4000 adolescents with type 1 diabetes registered in the Swedish paediatric diabetes quality registry, and above the age of 18years in the Swedish National Diabetes Registry was used. When dividing HbA1c values in three groups; < 7.4% (57mmol/mol), 7.4-9.3% (57-78mmol/mol) and >9.3% (78mmol/mol), there was a higher proportion of females in the highest group during adolescence. In the group with the highest HbA1c values during adolescence and as adults, 51.7% were females, expected value 46.2%; in the group with low HbA1c values in both registries, 34.2% were females, p<0.001. As adults, more females had retinopathy, p<0.05. Females had higher mean HbA1c values at diagnosis, 11.2 vs. 10.9% (99 vs. 96mmol/mol), p<0.03, during adolescence, 8.5 vs. 8.2% (69 vs. 66mmol/mol) p<0.01, but not as young adults. Worse glycaemic control was found in adolescent females, and they had a higher frequency of microvascular complications. Improved paediatric diabetes care is of great importance for increasing the likelihood of lower mortality and morbidity later in life. Copyright © 2016 Elsevier Inc. All rights reserved.

The need for obtaining accurate nationwide estimates of diabetes prevalence in India - Rationale for a national study on diabetes

PubMed Central

Anjana, R.M.; Ali, M.K.; Pradeepa, R.; Deepa, M.; Datta, M.; Unnikrishnan, R.; Rema, M.; Mohan, V.

2011-01-01

According to the World Diabetes Atlas, India is projected to have around 51 million people with diabetes. However, these data are based on small sporadic studies done in some parts of the country. Even a few multi-centre studies that have been done, have several limitations. Also, marked heterogeneity between States limits the generalizability of results. Other studies done at various time periods also lack uniform methodology, do not take into consideration ethnic differences and have inadequate coverage. Thus, till date there has been no national study on the prevalence of diabetes which are truly representative of India as a whole. Moreover, the data on diabetes complications is even more scarce. Therefore, there is an urgent need for a large well-planned national study, which could provide reliable nationwide data, not only on prevalence of diabetes, but also on pre-diabetes, and the complications of diabetes in India. A study of this nature will have enormous public health impact and help policy makers to take action against diabetes in India. PMID:21537089

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

Temporal trends and factors associated with diabetes mellitus among patients hospitalized with heart failure: Findings from Get With The Guidelines-Heart Failure registry.

PubMed

Echouffo-Tcheugui, Justin B; Xu, Haolin; DeVore, Adam D; Schulte, Phillip J; Butler, Javed; Yancy, Clyde W; Bhatt, Deepak L; Hernandez, Adrian F; Heidenreich, Paul A; Fonarow, Gregg C

2016-12-01

The contribution of diabetes to the burden of heart failure (HF) remains largely undescribed. Assessing diabetes temporal trends among US patients hospitalized with HF and their relation with quality measures in real-world practice can help to define this burden. Using data from the Get With the Guidelines-Heart Failure registry, we assessed temporal trends in diabetes prevalence among patients with HF and in subgroups with reduced ejection fraction (HFrEF; EF < 40%), borderline EF (HFbEF; 40%≤EF <50%), or preserved EF (HFpEF; EF ≥ 50%), hospitalized between 2005 and 2015. Logistic regression was used to assess whether in-hospital outcomes and HF quality of care were related to trends. Among 364,480 HF hospitalizations, 160,171 had diabetes (44.0% overall, 41.8% in HFrEF, 46.7% in HFbEF, 45.5% in HFpEF). There was a temporal increase in diabetes frequency in HF patients (43.2%-45.8%; P trend <.0001), including among those with HFrEF (42.0%-43.6%; P trend <.0001), HFbEF (46.0%-49.2%; P trend <.0001), or HFpEF (43.6%-46.8%, P trend <.0001). Diabetic patients had a longer hospital stay (adjusted odds ratio 1.14, 95% CI 1.12-1.16), but lower in-hospital mortality (adjusted odds ratio 0.93 [0.89-0.97]) compared with those without diabetes, with limited differences in quality measures. Temporal trends in diabetes were not associated with in-hospital mortality or length of stay. There were no temporal interactions of most HF quality measures with diabetes status. Approximately 44% of hospitalized HF patients have diabetes, and this proportion has been increasing over the past 10years, particularly among those patients with new-onset HFpEF. Copyright © 2016 Elsevier Inc. All rights reserved.

Lessons from implementing a combined workflow-informatics system for diabetes management.

PubMed

Zai, Adrian H; Grant, Richard W; Estey, Greg; Lester, William T; Andrews, Carl T; Yee, Ronnie; Mort, Elizabeth; Chueh, Henry C

2008-01-01

Shortcomings surrounding the care of patients with diabetes have been attributed largely to a fragmented, disorganized, and duplicative health care system that focuses more on acute conditions and complications than on managing chronic disease. To address these shortcomings, we developed a diabetes registry population management application to change the way our staff manages patients with diabetes. Use of this new application has helped us coordinate the responsibilities for intervening and monitoring patients in the registry among different users. Our experiences using this combined workflow-informatics intervention system suggest that integrating a chronic disease registry into clinical workflow for the treatment of chronic conditions creates a useful and efficient tool for managing disease.

Lessons from Implementing a Combined Workflow–Informatics System for Diabetes Management

PubMed Central

Zai, Adrian H.; Grant, Richard W.; Estey, Greg; Lester, William T.; Andrews, Carl T.; Yee, Ronnie; Mort, Elizabeth; Chueh, Henry C.

2008-01-01

Shortcomings surrounding the care of patients with diabetes have been attributed largely to a fragmented, disorganized, and duplicative health care system that focuses more on acute conditions and complications than on managing chronic disease. To address these shortcomings, we developed a diabetes registry population management application to change the way our staff manages patients with diabetes. Use of this new application has helped us coordinate the responsibilities for intervening and monitoring patients in the registry among different users. Our experiences using this combined workflow-informatics intervention system suggest that integrating a chronic disease registry into clinical workflow for the treatment of chronic conditions creates a useful and efficient tool for managing disease. PMID:18436907

Acute coronary syndrome registry from four large centres in United Arab Emirates (UAE-ACS Registry)

PubMed Central

Yusufali, Afzalhussein M; AlMahmeed, Wael; Tabatabai, Sadeq; Rao, Kabad; Binbrek, Azan

2010-01-01

Objective To identify the characteristics, treatments and hospital outcomes of patients diagnosed as having acute coronary syndrome (ACS) in the United Arab Emirates (UAE). Design A 3-year prospective registry. Setting Four tertiary care hospitals in three major cities of UAE from December 2003 to December 2006. Patients 1842 eligible consecutive patients with suspected ACS. Interventions None. Main outcome measures Characteristics, treatments and in-hospital outcomes were recorded. Results The mean age was 50.8±10.0 years, and 93.1% were male. More than half (51%) had ST elevation myocardial infarction (STEMI). The smoking rate was 46.4%, and diabetes was present in 38.9%. Only a minority (17.3%) used the ambulance services. For patients with STEMI, the median symptom to hospital time was 127 (IQR 60–256) min, and the median diagnostic ECG to thrombolysis time was 28 (IQR 16–50) min. Reperfusion in STEMI was in 81.4% (64.8% thrombolysis and 16.6% primary percutaneous coronary intervention). During hospitalisation, only a minority of the patients did not receive antiplatelets, anticoagulants, beta-blockers, ACE inhibitors and statin therapy. In-hospital complications were not common in our registry cohort. In-hospital mortality was 1.68%. Conclusions ACS patients in UAE are young but have higher risk factors such as smoking and diabetes. Almost half present as STEMI. Only a minority use ambulance services. PMID:27325958

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

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.

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

Racial disparities in African Americans with diabetes: process and outcome mismatch.

PubMed

Bulger, John B; Shubrook, Jay H; Snow, Richard

2012-08-01

Over the past 2 decades, numerous studies have demonstrated the existence of racial disparities in patient care in the United States. Specifically, African Americans with diabetes are less likely to have recommended process of care measures performed and outcome benchmarks for quality of care. To evaluate the delivery of diabetes care (processes and outcomes) associated with racial categories using a national web-based registry-the American Osteopathic Association Clinical Assessment Program (AOA-CAP). A retrospective analysis of data retrieved from the AOA-CAP database on outcomes and process measures for diabetes. A total of 10,699 Caucasian and African American patients who received diabetes care had data entered into the AOA-CAP registry between July 1, 2005, and October 30, 2010. African Americans represented 3123 patients (29%), Caucasians 7576 (71%). Demographic, process of care, and outcomes comparisons between ethnicities were carried out using ?2 and t tests. Composite measures of process and outcomes of diabetes care were created to investigate the effect of race on care. The process of care composite measure was significantly different among African American patients (P = .02) who were more likely to receive all indicated care than Caucasian patients (33.9% vs 31.6%). Evaluation of the composite outcome measure, which quantifies the percentage of patients achieving control of all 3 intermediate outcomes, was (P <.001) lower in African Americans than in Caucasians (8.1% vs 12.3%). African American patients with diabetes were as likely or more likely to have recommended process of care measures performed. In spite of this, intermediate diabetes outcomes were still poorer in the same African American population.

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.

Current trends and outcomes of breast reconstruction following nipple-sparing mastectomy: results from a national multicentric registry with 1006 cases over a 6-year period.

PubMed

Casella, Donato; Calabrese, Claudio; Orzalesi, Lorenzo; Gaggelli, Ilaria; Cecconi, Lorenzo; Santi, Caterina; Murgo, Roberto; Rinaldi, Stefano; Regolo, Lea; Amanti, Claudio; Roncella, Manuela; Serra, Margherita; Meneghini, Graziano; Bortolini, Massimiliano; Altomare, Vittorio; Cabula, Carlo; Catalano, Francesca; Cirilli, Alfredo; Caruso, Francesco; Lazzaretti, Maria Grazia; Meattini, Icro; Livi, Lorenzo; Cataliotti, Luigi; Bernini, Marco

2017-05-01

Reconstruction options following nipple-sparing mastectomy (NSM) are diverse and not yet investigated with level IA evidence. The analysis of surgical and oncological outcomes of NSM from the Italian National Registry shows its safety and wide acceptance both for prophylactic and therapeutic cases. A further in-depth analysis of the reconstructive approaches with their trend over time and their failures is the aim of this study. Data extraction from the National Database was performed restricting cases to the 2009-2014 period. Different reconstruction procedures were analyzed in terms of their distribution over time and with respect to specific indications. A 1-year minimum follow-up was conducted to assess reconstructive unsuccessful events. Univariate and multivariate analyses were performed to investigate the causes of both prosthetic and autologous failures. 913 patients, for a total of 1006 procedures, are included in the analysis. A prosthetic only reconstruction is accomplished in 92.2 % of cases, while pure autologous tissues are employed in 4.2 % and a hybrid (prosthetic plus autologous) in 3.6 %. Direct-to-implant (DTI) reaches 48.7 % of all reconstructions in the year 2014. Prophylactic NSMs have a DTI reconstruction in 35.6 % of cases and an autologous tissue flap in 12.9 % of cases. Failures are 2.7 % overall: 0 % in pure autologous flaps and 9.1 % in hybrid cases. Significant risk factors for failures are diabetes and the previous radiation therapy on the operated breast. Reconstruction following NSM is mostly prosthetic in Italy, with DTI gaining large acceptance over time. Failures are low and occurring in diabetic and irradiated patients at the multivariate analysis.

National Surveillance of Central Diabetes Insipidus (CDI) in Denmark: results from 5 years registration of 9309 prescriptions of desmopressin to 1285 CDI patients.

PubMed

Juul, K V; Schroeder, M; Rittig, S; Nørgaard, J P

2014-06-01

Epidemiological data for central diabetes insipidus (CDI) are sparse. The purpose of this study was to provide accurate epidemiological data on CDI on a national level. This was a drug utilization and patient registry study during a 5-year period from 2007 to 2011. We used the Danish National Prescription Registry data linked with the Danish National Patient Registry to study the epidemiology of CDI using waiting time distribution and other pharmacoepidemiological methods. A total of 1285 patients with CDI were recorded in the observation period and given 9309 prescriptions for desmopressin in the nasal formulation, orodispersible tablet, or conventional tablet. The period prevalence rate of CDI in Denmark over the 5-year period investigated was 23 CDI patients per 100 000 inhabitants, with a higher prevalence in children and older adults (>80 years of age). The 1-year period prevalence rate of CDI decreased in Denmark over the 5 years from approximately 10 to 7 CDI patients per 100 000 inhabitants. The yearly incidence rate of new cases of CDI was found to be 3 to 4 patients per 100 000. The incidence of (presumable) congenital CDI was found to be 2 infants per 100 000 infants. Half of the patients with CDI prescribed as oral treatment were provided dosing instructions to only administer the drug before bedtime, and one third of the CDI patients either had no specific instructions or were instructed to use the drug as needed. Hospital admissions due to severe hyponatremia occurred in 0.9% of patients over a 5-year period, predominantly in females with an incidence ratio of women to men of 1.8:1. Half of the cases of CDI are acquired later in life. At least half of the patients with CDI are instructed to prevent nocturnal polyuria, but it is not clear whether their CDI remains uncontrolled during the daytime or, alternatively, whether they use desmopressin only as needed. Female patients with CDI had approximately twice the number of hospital admissions due to

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

PubMed

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

2016-11-01

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

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.

Clinical Impact of Diabetes Mellitus on Outcomes After Transcatheter Aortic Valve Replacement: Insights From the Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry.

PubMed

Abramowitz, Yigal; Vemulapalli, Sreekanth; Chakravarty, Tarun; Li, Zhuokai; Kapadia, Samir; Holmes, David; Matsouaka, Roland A; Wang, Alice; Cheng, Wen; Forrester, James S; Smalling, Richard; Thourani, Vinod; Mack, Michael; Leon, Martin; Makkar, Raj R

2017-11-01

Diabetes mellitus (DM) adversely affects morbidity and mortality for cardiovascular diseases and procedures. Data evaluating the outcomes of transcatheter aortic valve replacement (TAVR) in diabetic patients are limited by small sample size and contradictory results. We aimed to establish the magnitude of risk and the incremental influence of insulin dependency by examining short- and long-term adverse outcomes according to DM status and therapy in the world's largest TAVR registry. We analyzed data from the Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry. In-hospital mortality, 30-day mortality, and 1-year mortality after TAVR in patients with and without DM were evaluated using multivariate modeling. Among 47 643 patients treated with TAVR from November 2011 through September 2015 at 394 US hospitals, there were 17 849 (37.5%) patients with DM. Overall, 6600 of the diabetic patients were insulin treated (IT). Thirty-day mortality was 5.0% in patients with DM (6.1% in IT DM and 4.4% in non-IT DM; P <0.001) versus 5.9% in patients without DM ( P <0.001). Overall, 1-year mortality was 21.8% in patients with DM (24.8% in IT DM and 20.1% in non-IT DM; P <0.001) versus 21.2% in patients without DM ( P =0.274). In a multivariable model, DM was associated with increased 1-year mortality (hazard ratio, 1.30; 95% confidence interval, 1.13-1.49; P <0.001). Subgroup multivariable analysis showed stronger mortality association in IT diabetics (hazard ratio, 1.57; 95% confidence interval, 1.28-1.91; P <0.001) than in non-IT diabetics (hazard ratio, 1.17; 95% confidence interval, 1.00-1.38; P =0.052). Our data establish the magnitude of short- and long-term risk conferred by DM and the incremental risk conferred by insulin dependency in the performance of TAVR. URL: https://www.clinicaltrials.gov. Unique identifier: NCT01737528. © 2017 American Heart Association, Inc.

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.

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.

Assessment of a National Diabetes Education Program diabetes prevention toolkit: The D2d experience.

PubMed

Devchand, Roshni; Sheehan, Patricia; Gallivan, Joanne M; Tuncer, Diane M; Nicols, Christina

2017-09-01

The National Diabetes Education Program created the Small Steps. Big Rewards. GAME PLAN. toolkit to deliver basic type 2 diabetes prevention information to individuals at risk. The purpose of this study is to test the impact of GAME PLAN on diabetes prevention knowledge and behavioral readiness in the vitamin D and type 2 diabetes (D2d) study and participant satisfaction with toolkit materials. Three hundred sixty adults at risk for diabetes participating in the D2d study were enrolled. Participants took a pretest, were sent home with the GAME PLAN, then took a posttest at their next visit, 3 months later. The Wilcoxon-signed rank test was used to examine changes in knowledge and behavioral readiness between scale scores pre- and posttest. There were modest increases in composite diabetes prevention knowledge scores (p < .05) and behavioral readiness scores (p < .001) from pre- to posttest. Participants also reported at posttest that the toolkit materials were appropriate, comprehensive, and relevant. The GAME PLAN health education materials improve knowledge and behavioral readiness among adults at risk for diabetes. Providers can use GAME PLAN as one component of diabetes prevention education. ©2017 American Association of Nurse Practitioners.

Heterogeneity in Trauma Registry Data Quality: Implications for Regional and National Performance Improvement in Trauma.

PubMed

Dente, Christopher J; Ashley, Dennis W; Dunne, James R; Henderson, Vernon; Ferdinand, Colville; Renz, Barry; Massoud, Romeo; Adamski, John; Hawke, Thomas; Gravlee, Mark; Cascone, John; Paynter, Steven; Medeiros, Regina; Atkins, Elizabeth; Nicholas, Jeffrey M

2016-03-01

Led by the American College of Surgeons Trauma Quality Improvement Program, performance improvement efforts have expanded to regional and national levels. The American College of Surgeons Trauma Quality Improvement Program recommends 5 audit filters to identify records with erroneous data, and the Georgia Committee on Trauma instituted standardized audit filter analysis in all Level I and II trauma centers in the state. Audit filter reports were performed from July 2013 to September 2014. Records were reviewed to determine whether there was erroneous data abstraction. Percent yield was defined as number of errors divided by number of charts captured. Twelve centers submitted complete datasets. During 15 months, 21,115 patient records were subjected to analysis. Audit filter captured 2,901 (14%) records and review yielded 549 (2.5%) records with erroneous data. Audit filter 1 had the highest number of records identified and audit filter 3 had the highest percent yield. Individual center error rates ranged from 0.4% to 5.2%. When comparing quarters 1 and 2 with quarters 4 and 5, there were 7 of 12 centers with substantial decreases in error rates. The most common missed complications were pneumonia, urinary tract infection, and acute renal failure. The most common missed comorbidities were hypertension, diabetes, and substance abuse. In Georgia, the prevalence of erroneous data in trauma registries varies among centers, leading to heterogeneity in data quality, and suggests that targeted educational opportunities exist at the institutional level. Standardized audit filter assessment improved data quality in the majority of participating centers. Copyright © 2016 American College of Surgeons. Published by Elsevier Inc. All rights reserved.

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

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.

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

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…

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.

Higher levels of physical activity are independently associated with a lower incidence of diabetic retinopathy in Japanese patients with type 2 diabetes: A prospective cohort study, Diabetes Distress and Care Registry at Tenri (DDCRT15).

PubMed

Kuwata, Hirohito; Okamura, Shintaro; Hayashino, Yasuaki; Tsujii, Satoru; Ishii, Hitoshi

2017-01-01

We assessed the prospective association between baseline levels of physical activity (PA) and the incidence of newly developed diabetic retinopathy (DR) in patients with type 2 diabetes. Data from 1,814 patients with type 2 diabetes without DR were obtained from a Japanese diabetes registry at Tenri Hospital, Nara, Japan. To assess the independent correlations between baseline PA levels and newly developed DR, the participants were divided into five categories based on their PA levels. A Cox proportional hazards model with time-varying exposure information was used and adjusted for potential confounders to assess the independent correlations. At baseline, the mean age, BMI, and hemoglobin A1c levels of the patients were 65.5 years, 24.5 kg/m2, and 7.2% (54 mmol/mol), respectively. After 2 years, newly developed DR was confirmed in 184 patients (10.1%). Patients with newly developed DR had longer duration of type 2 diabetes (14.7 versus 11.0 years, p < 0.0001), higher systolic blood pressure (139.2 versus 135.1 mmHg, p = 0.0012), lower estimated glomerular filtration rate (74.0 versus 77.1 mL/min/1.73 m2, p = 0.0382), greater urinary albumin-creatinine ratio (4.00 versus 2.45 mg/mmol, p < 0.0039), and higher HbA1c levels (7.5 versus 7.2%, p = 0.0006) than those without newly developed DR. The multivariable-adjusted hazard ratios for DR development were 0.87 (95% CI, 0.53-1.40; p = 0.557), 0.83 (95% CI, 0.52-1.31; p = 0.421), 0.58 (95% CI, 0.35-0.94; p = 0.027), and 0.63 (95% CI, 0.42-0.94; p = 0.025)for the second, third, fourth, and fifth PA categories, respectively, compared with the reference category of patients with a mean PA of 0 metabolic equivalent of task-hours/week). Higher PA levels are independently associated with a lower incidence of DR in Japanese patients with type 2 diabetes.

Low levels of arsenic in drinking water and type 2 diabetes in Middle Banat region, Serbia.

PubMed

Jovanovic, Dragana; Rasic-Milutinovic, Zorica; Paunovic, Katarina; Jakovljevic, Branko; Plavsic, Snezana; Milosevic, Jelena

2013-01-01

Arsenic in drinking water presents a serious public health problem in Serbia, but its relationship with diabetes has not been studied previously. The aim of this study was to explore the association between exposure to arsenic in drinking water and the occurrence of type 2 diabetes in Middle Banat region, Serbia. This cross-sectional study comprised two populations. Exposed population in Middle Banat region consumes drinking water with arsenic (mean = 56 μg/L); unexposed population from six regions in Central Serbia consumes arsenic below detection limit (2 μg/L). Newly diagnosed cases of type 2 diabetes were obtained from the National Registry of Diabetes in 2008. The Registry included age, gender, family history of diabetes, presence of overweight, central obesity, cholesterol and triglyceride levels. In addition, the number of cases of diabetes reported in years 2006, 2007 and 2009 was used to calculate standardized incidence rates for both populations. Two populations were comparable by age, family history of diabetes and prevalence of overweight persons. Unexposed population was more likely to have central obesity, and high total cholesterol and triglycerides. Standardized incidence rates of type 2 diabetes were higher in exposed population. Odds ratios for type 2 diabetes were significantly higher for the exposed population, both men and women, in the period from 2006 to 2009, when compared with the unexposed population. The population from Middle Banat region, consuming drinking water with low levels of arsenic, was at higher risk for the occurrence of type 2 diabetes in comparison to the unexposed population in Central Serbia. Copyright © 2012 Elsevier GmbH. All rights reserved.

Maternal and paternal age at delivery, birth order, and risk of childhood onset type 1 diabetes: population based cohort study

PubMed Central

Stene, Lars C; Magnus, Per; Lie, Rolv T; Søvik, Oddmund; Joner, Geir

2001-01-01

Objective To estimate the associations of maternal and paternal age at delivery and of birth order with the risk of childhood onset type 1 diabetes. Design Cohort study by record linkage of the medical birth registry and the national childhood diabetes registry in Norway. Setting Norway. Subjects All live births in Norway between 1974 and 1998 (1.4 million people) were followed for a maximum of 15 years, contributing 8.2 million person years of observation during 1989-98. 1824 cases of type 1 diabetes diagnosed between 1989 and 1998 were identified. Main outcome measures Incidence of type 1 diabetes. Results There was no association between maternal age at delivery and type 1 diabetes among firstborn children, but among fourthborn children there was a 43.2% increase in incidence of diabetes for each five year increase in maternal age (95% confidence interval 6.4% to 92.6%). Each increase in birth order was associated with a 17.9% reduction in incidence (3.2% to 30.4%) when maternal age was 20-24 years, but the association was weaker when maternal age was 30 years or more. Paternal age was not associated with type 1 diabetes after maternal age was adjusted for. Conclusions Intrauterine factors and early life environment may influence the risk of type 1 diabetes. The relation of maternal age and birth order to risk of type 1 diabetes is complex. What is already known on this topicMaternal age at birth is positively associated with risk of childhood onset type 1 diabetesStudies of the effect of birth order on risk of type 1 diabetes have given inconsistent resultsWhat does this study add?In a national cohort, risk of diabetes in firstborn children was not associated with maternal ageIncreasing maternal age was a risk factor in children born second or laterThe strength of the association increased with increasing birth order PMID:11509426

3 CFR 8447 - Proclamation 8447 of October 30, 2009. National Diabetes Month, 2009

Code of Federal Regulations, 2010 CFR

2010-01-01

... A Proclamation Diabetes directly affects the lives of millions of Americans and their families... and live productive, normal lives. During National Diabetes Month, we recommit to educating Americans... obesity in our country. Preventive care is the simplest way to avoid diabetes and its complications. A...

77 FR 6129 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Closed Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2012-02-07

... Diabetes and Digestive and Kidney Diseases Notice of Closed Meetings Pursuant to section 10(d) of the....niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases... of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel...

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.

Treatment intensification without improved HbA1c levels in children and adolescents with Type 1 diabetes mellitus.

PubMed

Sildorf, S M; Hertel, N T; Thomsen, J; Fredheim, S; Hastrup, H; Pipper, C; Hertz, B; Svensson, J

2016-04-01

To examine trends in diabetes treatment in Danish children and adolescents with Type 1 diabetes mellitus, comparing treatment intensity with metabolic outcomes in the population, and to describe the challenges of population-based registries in a clinical setting with rapidly changing treatment methods. This observational study is based on the Danish national population registry of childhood diabetes, which includes 99% of children diagnosed with Type 1 diabetes before the age of 15 years. We included 4527 people diagnosed between 2000 and 2012. Self-monitored blood glucose measurements, insulin injections/boluses, treatment method and metabolic control quantifications were analysed and adjusted for the effects of gender and ethnicity, the combined effect of age, visit year and duration, and for the random effects of individual and hospital settings. Treatment was intensified via an increasing number of self-monitored blood glucose measurements and injections/boluses. More than six injections/boluses and an increased number of self-monitored blood glucose measurements were significantly associated with lower metabolic control. No reduction, however, in the overall mean HbA1c concentration was observed between 2005 [66 mmol/mol (8.2%)] and 2012 [65 mmol/mol (8.1%)]. Changed registration practices in 2009 introduced artificial jumps in data. Intensifying treatment alone does not lead to improved metabolic control in the overall population despite the appearance of lower HbA1c in individuals with a greater number of self-monitored blood glucose measurements and injections/boluses. The contradictory results reflect difficulties in using observational studies to predict results of intervention in the individual. Data collected from population-based registries need to be adjusted continuously to reflect changes in care. © 2015 Diabetes UK.

Epidemiology of Stroke in Costa Rica: A 7-Year Hospital-Based Acute Stroke Registry of 1319 Consecutive Patients.

PubMed

Torrealba-Acosta, Gabriel; Carazo-Céspedes, Kenneth; Chiou, Sy Han; O'Brien, Anthony Terrence; Fernández-Morales, Huberth

2018-05-01

Limited data on stroke exist for Costa Rica. Therefore, we created a stroke registry out of patients with stroke seen in the Acute Stroke Unit of the Hospital Calderon Guardia. We analyzed 1319 patients enrolled over a 7-year period, which incorporated demographic, clinical, laboratory, and neuroimaging data. The mean age of patients with stroke was 68.0 ± 15.5 years. Seven hundred twenty-five were men and the age range was 13-104 years. The most prevalent risk factors were hypertension (78.8%), dyslipidemia (36.3%), and diabetes (31.9%). Fifteen percent had atrial fibrillation and 24.7% had a previous stroke or transient ischemic attack. Prevalence of hypertension and atrial fibrillation increased with age; however, younger patients were more associated with thrombophilia. We documented 962 (72.9%) ischemic and 270 (20.5%) hemorrhagic strokes. Of the ischemic strokes, 174 (18.1%) were considered secondary to large-artery atherothrombosis, 175 (18.2%) were due to cardiac embolism, 19 (2.0%) were due to lacunar infarcts, and 25 (2.6%) were due to other determined causes. Five hundred sixty-nine (59.1%) remained undetermined. Atherothrombotic strokes were mostly associated with dyslipidemia, diabetes, metabolic syndrome, and obesity, whereas lacunar infarcts were associated with hypertension, smoking, sedentary lifestyle, and previous stroke or transient ischemic attack. Of our patients, 69.9% scored between 0 and 9 in the initial National Institutes of Health Stroke Scale (NIHSS). We found differences in sociodemographic features, risk factors, and stroke severity among stroke subtypes. Risk factor prevalence was similar to other registries involving Hispanic populations. Copyright © 2018 National Stroke Association. All rights reserved.

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

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

Diabetes in the national TV news: 1971-1981.

PubMed

Pichert, J W

1983-01-01

Millions of Americans get virtually all their current events information from the national nightly television news programs. The purpose of this study was to learn what diabetes-related information had been broadcast over the last 11 years by the network news programs. Another objective was to learn how that coverage compared with that given other chronic diseases. The Vanderbilt Television News Archives (VTNA) has videotaped every ABC, NBC, and CBS nightly newscast since mid-1968. The contents of each telecast have been catalogued and indexed. Indexes were searched for every segment that had anything to do with diabetes from 1971 through 1981. In the last 11 years there have been 32 diabetes-related news segments. More than a third were about the controversial attempt to ban saccharin. Because each network may carry essentially the same story, the number of nonoverlapping reports was 20. The total time of the diabetes-related segments was 70 minutes. The topics covered by the news reports included oral agents (5 reports), artificial sweeteners (12), biosynthetic human insulin (BHI) (7), and an assortment of unique items. The 32 diabetes-related segments compare with 23 about arthritis, 215 about heart diseases, and 925 dealing with cancer. A compilation of the non-overlapping segments has been shown to health professionals, who felt the stories were generally accurate. Diabetes is not portrayed as a killer. Therefore, diabetes seems less serious, and therefore less newsworthy, than heart disease or cancer.

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.

Effect of assistance on peritonitis risk in diabetic patients treated by peritoneal dialysis: report from the French Language Peritoneal Dialysis Registry.

PubMed

Benabed, Anais; Bechade, Clemence; Ficheux, Maxence; Verger, Christian; Lobbedez, Thierry

2016-04-01

Diabetic patients treated by peritoneal dialysis (PD) have been reported to be at an increased risk of peritonitis. This has been attributed to impairment in host defense, visual impairment, disability and muscle wasting, which could compromise ability to safely perform catheter connections. This study aimed to evaluate whether assisted PD is associated with a lower risk of peritonitis in diabetic patients. This was a retrospective study based on data from the French Language Peritoneal Dialysis Registry. We included diabetic patients starting PD between 1 January 2002 and 31 December 2012. The end of the observation period was 31 December 2013. Using complementary regression analysis (Fine and Gray, Hurdle models), we assessed the relationship between peritonitis occurrence, peritonitis number over time and the type of assisted PD. Of the 3598 diabetic patients, there were 2040 patients on nurse-assisted PD. These patients were older, more comorbid and more frequently on continuous ambulatory peritoneal dialysis (CAPD). In the multivariate analysis, nurse assistance was associated with a reduced risk of peritonitis in the Fine and Gray [subdistribution hazard ratio: 0.78 (95% confidence interval, CI, 0.68-0.89)] and in the first component of the Hurdle models [rate ratio: 0.82 (95% CI 0.71-0.93)], but not a lower incidence of peritonitis after an initial episode [rate ratio: 0.82 (95% CI 0.95-1.38)]. Transplant failure, glomerulonephritis and CAPD were associated with an increased risk. In France, nurse-assisted PD is associated with a lower risk of peritonitis in diabetic patients treated by PD but not a lower incidence of peritonitis. © The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

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

All-cause mortality and its risk factors among type 1 and type 2 diabetes mellitus in a country facing diabetes epidemic.

PubMed

Al-Rubeaan, Khalid; Youssef, Amira M; Ibrahim, Heba M; Al-Sharqawi, Ahmad H; AlQumaidi, Hamid; AlNaqeb, Dhekra; Aburisheh, Khaled H

2016-08-01

Diabetes mellitus is associated with an increased risk of premature death mainly secondary to macrovascular and microvascular complications. Mortality data from the Eastern Mediterranean region known for its high diabetes prevalence are lacking. We aimed to assess all-cause mortality and its predictors using large cohort from the Saudi National Diabetes Registry (SNDR). The study population comprised of 40,827 individuals with type 1 and type 2 diabetes mellitus aged ⩾25years registered in SNDR between January 2007 and December 2013. All patients were followed until death, according to the date of death or reaching 100years of age or end of the study. Death was verified from the national civil affairs database. The general population during the study period was used as a reference for standardized mortality ratio (SMR) calculation. With a total of 152,038 person-years of follow up, 2582 patients were deceased giving all-cause mortality rate of 16.98 per 1000 person-years and SMR (95% CI) of 1.93 (1.86-2.00). Mortality rates were higher among men and increased with age, while SMR attenuated with increasing age. The independent predictors for all-cause mortality were longer diabetes duration, presence of macrovascular complications, nephropathy, retinopathy, hypertension, male gender and older age, while morbid obesity and the presence of hyperlipidemia were associated with reduced risk. The unexpectedly low mortality rate in this population would be associated with higher number of deaths as a result of the high prevalence of diabetes and its complications. Reducing the prevalence of diabetes and its complications would reduce the risk of mortality. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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.

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.

78 FR 64509 - National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2013-10-29

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

78 FR 64519 - National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2013-10-29

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

78 FR 36203 - National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-17

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

Diabetes services in the UK: third national survey confirms continuing deficiencies.

PubMed

Jefferson, I G; Swift, P G F; Skinner, T C; Hood, G K

2003-01-01

To determine the current level of diabetes services and to compare the results with previous national surveys. A questionnaire was mailed to all paediatricians in the UK identified as providing care for children with diabetes aged under 16 years. Information was sought on staffing, personnel, clinic size, facilities, and patterns of care. Responses were compared with results of two previous national surveys. Replies were received from 244 consultant paediatricians caring for an estimated 17 192 children. A further 2234 children were identified as being cared for by other consultants who did not contribute to the survey. Of 244 consultants, 78% expressed a special interest in diabetes and 91% saw children in a designated diabetic clinic. In 93% of the clinics there was a specialist nurse (44% were not trained to care for children; 47% had nurse:patient ratio >1:100), 65% a paediatric dietitian, and in 25% some form of specialist psychology or counselling available. Glycated haemoglobin was measured routinely at clinics in 88%, retinopathy screening was performed in 87%, and microalbuminuria measured in 66%. Only 34% consultants used a computer database. There were significant differences between the services provided by paediatricians expressing a special interest in diabetes compared with "non-specialists", the latter describing less frequent clinic attendance of dietitians or psychologists, less usage of glycated haemoglobin measurements, and less screening for vascular complications. Non-specialist clinics met significantly fewer of the recommendations of good practice described by Diabetes UK. The survey shows improvements in services provided for children with diabetes, but serious deficiencies remain. There is a shortage of diabetes specialist nurses trained to care for children and paediatric dietitians, and a major shortfall in the provision of psychology/counselling services. The services described confirm the need for more consultant paediatricians to

78 FR 28859 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-05-16

... Diabetes and Digestive and Kidney Diseases Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Initial Review Group; Diabetes, Endocrinology and Metabolic....niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

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.

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.

The landscape for diabetes education: results of the 2012 AADE National Diabetes Education Practice Survey.

PubMed

Martin, Annette Lenzi; Warren, Joshua P; Lipman, Ruth D

2013-01-01

The National Member Practice Survey (NPS) of the American Association of Diabetes Educators (AADE) is conducted biannually to describe the current diabetes education practice in the United States and identify trends, opportunities, and areas for improvement. The 2012 NPS contained 49 questions about diabetes education providers, patients, and programs. The survey, sent electronically to approximately 13,000 AADE members, was completed by 3644 members. Testing was completed using a significance level of .05 or 95% confidence. While nurses and dietitians continued to comprise the majority of diabetes educators in 2012, a significant increase from 2010 occurred in the respondents identified as pharmacists (5% vs. 4%). Individuals holding the certified diabetes educator (CDE) credential decreased slightly in 2012 from 2010. Practice settings for diabetes education increased significantly in 2012 versus 2010 for hospital outpatient/clinic (44% vs. 37%) and hospital inpatient (20% vs. 15%) settings. Prediabetes education was provided by 78% of respondents. Nearly 53% of educators indicated they devoted more than 4 hours per week to data entry, significantly higher than any other amount of time. Collection of clinical and behavioral outcomes increased significantly in 2012 from 2010. Results of the 2012 NPS provide evidence that the practice of diabetes education is continuing to adapt to evolving models of health care in the United States by expanding the mix of practitioners providing education, engaging in necessary system support activities, and broadening the range of patients seen to include individuals at risk of developing diabetes.

High event rate after a first percutaneous coronary intervention in patients with diabetes mellitus: results from the Swedish coronary angiography and angioplasty registry.

PubMed

Ritsinger, Viveca; Saleh, Nawsad; Lagerqvist, Bo; Norhammar, Anna

2015-06-01

Patients with diabetes mellitus have reduced longevity after acute coronary syndromes and revascularization. However, knowledge of the long-term complication rates and patterns from an everyday life setting is lacking. Consecutive patients undergoing percutaneous coronary intervention included in the Swedish Coronary Angiography Angioplasty Registry (SCAAR) between 2006 and 2010 and with no previous revascularization were prospectively followed up for combined cardiovascular events (first of all-cause mortality, myocardial infarction, stroke, and heart failure) until December 31, 2010. The mean follow-up period was 920 days (SD, 530 days). Differences in background and procedural characteristics were adjusted for in a multivariate Cox regression model. Of 58 891 patients, mean age 67 years, 19% had diabetes mellitus; 27% of them were on diet treatment, 33% on oral glucose lowering, and 40% on insulin treatment. At admission, cardiovascular risk factors, multiple coronary vessel, and left main stem disease were more frequent in patients with diabetes mellitus and their revascularization was less often complete. The adjusted risk for combined cardiovascular events was higher in patients on insulin (hazard ratio [95% confidence interval], 1.63 [1.55-1.72]), on oral treatment (1.23 [1.15-1.31]), and on diet alone (1.21 [1.12-1.29]) compared with patients without diabetes mellitus. Insulin-treated patients ran an increased risk of restenosis (1.54 [1.39-1.71]) and stent thrombosis (1.56 [1.25-1.96]). The prognosis after a first percutaneous coronary intervention is more severe in patients with diabetes mellitus, in particular, in patients treated with insulin, with higher rates of mortality, cardiovascular events, and stent thrombosis over the following 5 years. © 2015 American Heart Association, Inc.

Comparison of education group strategies and home visits in type 2 diabetes mellitus: clinical trial.

PubMed

Santos, Jéssica Caroline Dos; Cortez, Daniel Nogueira; Macedo, Maísa Mara Lopes; Reis, Edna Afonso; Reis, Ilka Afonso; Torres, Heloísa Carvalho

2017-12-21

to compare the adherence and empowerment of patients with type 2 diabetes mellitus for self-care practices and glycemic control in group education strategies and home visits. Clinical trial with ten randomized clusters, performed with 238 patients with type 2 diabetes mellitus distributed in group education, home visit, and control group. Socio-demographic data, glycated hemoglobin and those obtained from the self-care and empowerment questionnaires were collected. Statistical analysis was performed separately by educational strategy. the mean age of the patients was 57.8 years old (SD = 9.4 years old), with a predominantly female participation (66.4%). Both strategies presented similar results regarding adherence to self-care practices and patient empowerment. There was also a reduction in glycated hemoglobin levels; however, only in the education group, the difference presented statistical significance (p <0.001). the strategies were effective; however, group education presented better glycemic control results in relation to the home visit. International registry: NCT02132338 and national: RBR-92j38t in the clinical trials registry.

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.

Exposure to Gestational Diabetes Mellitus: Impact on the Development of Early-Onset Type 2 Diabetes in Canadian First Nations and Non-First Nations Offspring.

PubMed

Sellers, Elizabeth A C; Dean, Heather J; Shafer, Leigh Anne; Martens, Patricia J; Phillips-Beck, Wanda; Heaman, Maureen; Prior, Heather J; Dart, Allison B; McGavock, Jonathan; Morris, Margaret; Torshizi, Ali A; Ludwig, Sora; Shen, Garry X

2016-12-01

Type 2 diabetes is increasing in children worldwide, with Canadian First Nations (FN) children disproportionally affected. The prevalence of gestational diabetes mellitus (GDM) also is increasing. The objective of this study was to evaluate the impact of GDM exposure in utero and FN status on the subsequent risk of type 2 diabetes in offspring in the first 30 years of life. In this population-based historical prospective cohort study, we used administrative databases linked to a clinical database to explore the independent association and interaction between GDM and FN status on the subsequent development of type 2 diabetes in offspring. Among 321,008 births with a median follow-up of 15.1 years, both maternal GDM and FN status were independently associated with subsequent risk of type 2 diabetes in offspring in the first 30 years of life (hazard ratio 3.03 [95% CI 2.44-3.76; P < 0.0001] vs. 4.86 [95% CI 4.08-5.79; P < 0.0001], respectively). No interaction between GDM and FN status on type 2 diabetes risk was observed. FN status had a stronger impact on the development of type 2 diabetes in offspring than GDM. GDM is an important modifiable risk factor for type 2 diabetes, and its prevention may reduce the prevalence of subsequent type 2 diabetes in offspring. This study adds unique and rigorous evidence to the global public health debate about the impact of GDM on the long-term health of offspring. © 2016 by the American Diabetes Association.

[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.

Impact of long-term air pollution exposure on metabolic control in children and adolescents with type 1 diabetes: results from the DPV registry.

PubMed

Lanzinger, Stefanie; Rosenbauer, Joachim; Sugiri, Dorothea; Schikowski, Tamara; Treiber, Birgit; Klee, Daniela; Rathmann, Wolfgang; Holl, Reinhard W

2018-06-01

Studies on the association between air pollution and metabolic control in children and adolescents with type 1 diabetes are rare and findings are inconsistent. We examined the relationship between air pollution variables (particulate matter with an aerodynamic diameter <10 μm [PM 10 ], NO 2 and accumulated ozone exposure [O 3 -AOT]) and metabolic variables (HbA 1c and daily insulin dose [U/kg body weight]) in children and adolescents with type 1 diabetes. We investigated 37,372 individuals with type 1 diabetes aged <21 years, documented between 2009 and 2014 in 344 German centres of the prospective diabetes follow-up registry (Diabetes-Patienten-Verlaufsdokumentation [DPV]). Long-term air pollution exposure (annual and quinquennial means) data were linked to participants via the five-digit postcode areas of residency. Cross-sectional multivariable regression analysis was used to examine the association between air pollution and metabolic control. After comprehensive adjustment, an interquartile range increase in O 3 -AOT was associated with a lower HbA 1c (-3.7% [95% CI -4.4, -3.0]). The inverse association between O 3 -AOT and HbA 1c persisted after additional adjustment for degree of urbanisation or additional adjustment for PM 10 . Moreover, the inverse association remained stable in further sensitivity analyses. No significant associations between HbA 1c and PM 10 or NO 2 were found. No association was observed between any of the three air pollutants and insulin dose. The inverse association between O 3 -AOT and HbA 1c could not be explained by regional differences in diabetes treatment or by other differences between urban and rural areas. Furthermore, our results remained stable in sensitivity analyses. Further studies on the association between air pollution and HbA 1c in children and adolescents with type 1 diabetes are needed to confirm our observed association and to elucidate underlying mechanisms.

Diabetes and Obesity as Independent Risk Factors for Osteoporosis: Updated Results from the ROIS/EMEROS Registry in a Population of Five Thousand Post-Menopausal Women Living in a Region Characterized by Heavy Environmental Pressure.

PubMed

Neglia, Cosimo; Argentiero, Alberto; Chitano, Giovanna; Agnello, Nadia; Ciccarese, Roberta; Vigilanza, Antonella; Pantile, Valerio; Argentiero, Domenico; Quarta, Raffaele; Rivezzi, Matteo; Di Tanna, Gian Luca; Di Somma, Carolina; Migliore, Alberto; Iolascon, Giovanni; Gimigliano, Francesca; Distante, Alessandro; Piscitelli, Prisco

2016-11-01

Objectives : We aimed to analyze bone mineralization and the effect of different risk factors for osteoporosis in postmenopausal women. Methods : We found 4909 postmenopausal subjects within ≥10,000 records from the ROIS/EMEROS (Ionian and Salento Osteoporosis Registry/Euro Mediterranean Registry of Osteoporosis) registry, a population study carried out in an area characterized by heavy environmental pressure between Brindisi and Taranto from 2009 to 2016. All subjects were assessed via phalangeal quantitative ultrasound (QUS) to evaluate their bone mineralization (assessed via amplitude dependent speed of sound (AD-SoS)) and the association between demineralization and the presence of other conditions or risk factors. Results : Mean age was 64 ± 9.5 years and mean body mass index (BMI) was 28.7 ± 3.5 kg/m². Pearson correlation analyses revealed a negative association between bone mineralization (AD-SoS) and BMI ( p < 0.001). By using multivariate logistic regression analysis, we observed significant values of odds ratios (ORs) of osteoporosis (adjusted for age, physical activity, and the use of drugs known to increase the risk of fractures) in subjects with diabetes and obesity: 1.39 (confidence interval (CI): 1.05-1.83) and 1.46 (CI: 1.20-1.78), respectively. A statistically significant linear trend of higher ORs of osteoporosis was found for increasing values of BMI. Conclusions : Our study confirmed the high impact of obesity and type 1 and type 2 diabetes on osteoporosis.

Diabetes and Obesity as Independent Risk Factors for Osteoporosis: Updated Results from the ROIS/EMEROS Registry in a Population of Five Thousand Post-Menopausal Women Living in a Region Characterized by Heavy Environmental Pressure

PubMed Central

Neglia, Cosimo; Argentiero, Alberto; Chitano, Giovanna; Agnello, Nadia; Ciccarese, Roberta; Vigilanza, Antonella; Pantile, Valerio; Argentiero, Domenico; Quarta, Raffaele; Rivezzi, Matteo; Di Tanna, Gian Luca; Di Somma, Carolina; Migliore, Alberto; Iolascon, Giovanni; Gimigliano, Francesca; Distante, Alessandro; Piscitelli, Prisco

2016-01-01

Objectives: We aimed to analyze bone mineralization and the effect of different risk factors for osteoporosis in postmenopausal women. Methods: We found 4909 postmenopausal subjects within ≥10,000 records from the ROIS/EMEROS (Ionian and Salento Osteoporosis Registry/Euro Mediterranean Registry of Osteoporosis) registry, a population study carried out in an area characterized by heavy environmental pressure between Brindisi and Taranto from 2009 to 2016. All subjects were assessed via phalangeal quantitative ultrasound (QUS) to evaluate their bone mineralization (assessed via amplitude dependent speed of sound (AD-SoS)) and the association between demineralization and the presence of other conditions or risk factors. Results: Mean age was 64 ± 9.5 years and mean body mass index (BMI) was 28.7 ± 3.5 kg/m2. Pearson correlation analyses revealed a negative association between bone mineralization (AD-SoS) and BMI (p < 0.001). By using multivariate logistic regression analysis, we observed significant values of odds ratios (ORs) of osteoporosis (adjusted for age, physical activity, and the use of drugs known to increase the risk of fractures) in subjects with diabetes and obesity: 1.39 (confidence interval (CI): 1.05–1.83) and 1.46 (CI: 1.20–1.78), respectively. A statistically significant linear trend of higher ORs of osteoporosis was found for increasing values of BMI. Conclusions: Our study confirmed the high impact of obesity and type 1 and type 2 diabetes on osteoporosis. PMID:27809297

Eating patterns and food intake of persons with type 1 diabetes within the T1D exchange.

PubMed

Powers, Margaret A; Gal, Robin L; Connor, Crystal G; Mangan, Meg; Maahs, David M; Clements, Mark A; Mayer-Davis, Elizabeth J

2018-05-22

To identify dietary intake and eating patterns of people with type 1 diabetes from childhood to later adulthood in relation to HbA1c. Trained interviewers conducted 24-hour recalls via phone utilizing a multiple pass approach and administered two nutrition questionnaires; 463 participants (or parents of participants) within the T1D Exchange clinic registry were included. Participants were 5 to 81 years with 80-101 participants in five age groups; 56% were female, and 92% were white, with a median diabetes duration of 11.1 years and a median HbA1c of 7.4% [57 mmol/mol]). Those with type 1 diabetes consumed less calories from carbohydrates and more from fats and protein than those in the general population, based on the National Health and Nutrition Examination Survey data. Carbohydrate intake was not correlated with HbA 1c levels. Increased fiber intake, more eating occasions, higher Healthy Eating Index scores, and higher nutrition knowledge scores were each associated with lower HbA1c levels. Food intake, eating patterns and nutrition knowledge are associated with glycemic control across a registry-based cohort of adults and children with type 1 diabetes. Additionally, these data can inform the design of future studies to advance our understanding of nutritional influences on type 1 diabetes self-care and control. Copyright © 2018 Elsevier B.V. All rights reserved.

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.

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 ...

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.

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

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.

75 FR 9911 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2010-03-04

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings Pursuant to section 10(d) of the... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel, Seeding Team Science in Diabetes... cycle. Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special...

A Pharmacy Student-Facilitated Interprofessional Diabetes Clinic With the Penobscot Nation.

PubMed

Martin, Sarah Levin; Williams, Evan; Huerth, Benjamin; Robinson, J Daniel

2015-11-05

American Indians/Alaska Natives have a greater increased risk for diabetes than non-Hispanic whites. Lifestyle interventions are effective in preventing and treating diabetes, and an interprofessional approach is important in diabetes management. The Penobscot Nation has a health center with a wide range of services. Our goal with the Nation was to 1) establish an interprofessional, student-facilitated diabetes clinic in the health center; 2) assess the clinic's preliminary impact. Relationship building and problem solving was instrumental in working toward the first goal. A survey was developed to assess satisfaction with the clinic. The clinical outcomes, mean and median values of HbA1c, were calculated at baseline (spring 2013) and were used to establish 2 groups of patients: those with controlled levels (<7%) and those with uncontrolled levels (≥ 7%). HbA1c was reassessed in fall 2013. Changes in HbA1c were calculated and compared using the Wilcoxon signed-rank test. The student-facilitated, interprofessional diabetes clinic has operated for 2 years, and changes are under way. More than 90% of participants reported being well satisfied with the clinic in the first year. Among the group with uncontrolled HbA1c (n = 18), mean HbA1c values declined from 9.3% to 7.6% (P = .004). Among the group with controlled HbA1c (n = 30), 83% were controlled at follow-up. The Penobscot diabetes clinic is evolving to meet the needs of community members, and pharmacy students have an interprofessional practice site well suited for experiential learning.

Diabetes, vestibular dysfunction, and falls: analyses from the National Health and Nutrition Examination Survey.

PubMed

Agrawal, Yuri; Carey, John P; Della Santina, Charles C; Schubert, Michael C; Minor, Lloyd B

2010-12-01

Patients with diabetes are at increased risk both for falls and for vestibular dysfunction, a known risk factor for falls. Our aims were 1) to further characterize the vestibular dysfunction present in patients with diabetes and 2) to evaluate for an independent effect of vestibular dysfunction on fall risk among patients with diabetes. National cross-sectional survey. Ambulatory examination centers. Adults from the United States aged 40 years and older who participated in the 2001-2004 National Health and Nutrition Examination Survey (n = 5,86). Diagnosis of diabetes, peripheral neuropathy, and retinopathy. Vestibular function measured by the modified Romberg Test of Standing Balance on Firm and Compliant Support Surfaces and history of falling in the previous 12 months. We observed a higher prevalence of vestibular dysfunction in patients with diabetes with longer duration of disease, greater serum hemoglobin A1c levels and other diabetes-related complications, suggestive of a dose-response relationship between diabetes mellitus severity and vestibular dysfunction. We also noted that vestibular dysfunction independently increased the odds of falling more than 2-fold among patients with diabetes (odds ratio, 2.3; 95% confidence interval, 1.1-5.1), even after adjusting for peripheral neuropathy and retinopathy. Moreover, we found that including vestibular dysfunction, peripheral neuropathy, and retinopathy in multivariate models eliminated the significant association between diabetes and fall risk. Vestibular dysfunction may represent a newly recognized diabetes-related complication, which acts as a mediator of the effect of diabetes mellitus on fall risk.

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.

The Prime Diabetes Model: Novel Methods for Estimating Long-Term Clinical and Cost Outcomes in Type 1 Diabetes Mellitus.

PubMed

Valentine, William J; Pollock, Richard F; Saunders, Rhodri; Bae, Jay; Norrbacka, Kirsi; Boye, Kristina

Recent publications describing long-term follow-up from landmark trials and diabetes registries represent an opportunity to revisit modeling options in type 1 diabetes mellitus (T1DM). To develop a new product-independent model capable of predicting long-term clinical and cost outcomes. After a systematic literature review to identify clinical trial and registry data, a model was developed (the PRIME Diabetes Model) to simulate T1DM progression and complication onset. The model runs as a patient-level simulation, making use of covariance matrices for cohort generation and risk factor progression, and simulating myocardial infarction, stroke, angina, heart failure, nephropathy, retinopathy, macular edema, neuropathy, amputation, hypoglycemia, ketoacidosis, mortality, and risk factor evolution. Several approaches novel to T1DM modeling were used, including patient characteristics and risk factor covariance, a glycated hemoglobin progression model derived from patient-level data, and model averaging approaches to evaluate complication risk. Validation analyses comparing modeled outcomes with published studies demonstrated that the PRIME Diabetes Model projects long-term patient outcomes consistent with those reported for a number of long-term studies. Macrovascular end points were reliably reproduced across five different populations and microvascular complication risk was accurately predicted on the basis of comparisons with landmark studies and published registry data. The PRIME Diabetes Model is product-independent, available online, and has been developed in line with good practice guidelines. Validation has indicated that outcomes from long-term studies can be reliably reproduced. The model offers new approaches to long-standing challenges in diabetes modeling and may become a valuable tool for informing health care policy. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

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.

78 FR 56906 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-09-16

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Digestive and Kidney Diseases Initial Review Group Diabetes, Endocrinology and Metabolic Diseases B..., [email protected] . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

Fasting triglycerides as a predictor of incident diabetes, insulin resistance and β-cell function in a Canadian First Nation.

PubMed

Riediger, Natalie D; Clark, Kirsten; Lukianchuk, Virginia; Roulette, Joanne; Bruce, Sharon

2017-01-01

Diabetes prevalence is substantially higher among Canadian First Nations populations than the non-First Nation population. Fasting serum triglycerides have been found to be an important predictor of incident diabetes among non-indigenous populations. However, there is a great need to understand diabetes progression within specific ethnic groups, particularly First Nations populations. The purpose of this study was to test for an association between fasting serum triglycerides and incident diabetes, changes in insulin resistance and changes in β-cell function in a Manitoba First Nation cohort. Study data were from two diabetes screening studies in Sandy Bay First Nation in Manitoba, Canada, collected in 2002/2003 and 2011/2012. The cohort was composed of respondents to both screening studies (n=171). Fasting blood samples and anthropometric, health and demographic data were collected. A generalised linear model with Poisson distribution was used to test for an association between fasting triglycerides and incident diabetes. There were 35 incident cases of diabetes among 128 persons without diabetes at baseline. Participants who developed incident type 2 diabetes were significantly older and had significantly higher body mass index (BMI; p=0.012), total cholesterol (p=0.007), fasting triglycerides (p<0.001), and Homeostatic Model Assessment of Insulin Resistance (HOMA-IR) (p<0.001). Fasting triglyceride level was found to be a statistically significant positive predictor of incident diabetes independent of age, sex and waist circumference at baseline. Participants with triglycerides in the highest tertile (≥2.11 mmol/l) had a 4.0-times higher risk of developing incident diabetes compared to those in the lowest tertile (p=0.03). Notably, neither waist circumference nor BMI were significant predictors of incident diabetes independent of age, sex and triglycerides. Fasting triglycerides may be useful as a clinical predictor of insulin resistance and diabetes

Fasting triglycerides as a predictor of incident diabetes, insulin resistance and β-cell function in a Canadian First Nation

PubMed Central

Riediger, Natalie D.; Clark, Kirsten; Lukianchuk, Virginia; Roulette, Joanne; Bruce, Sharon

2017-01-01

ABSTRACT Background: Diabetes prevalence is substantially higher among Canadian First Nations populations than the non-First Nation population. Fasting serum triglycerides have been found to be an important predictor of incident diabetes among non-indigenous populations. However, there is a great need to understand diabetes progression within specific ethnic groups, particularly First Nations populations. Objective: The purpose of this study was to test for an association between fasting serum triglycerides and incident diabetes, changes in insulin resistance and changes in β-cell function in a Manitoba First Nation cohort. Methods: Study data were from two diabetes screening studies in Sandy Bay First Nation in Manitoba, Canada, collected in 2002/2003 and 2011/2012. The cohort was composed of respondents to both screening studies (n=171). Fasting blood samples and anthropometric, health and demographic data were collected. A generalised linear model with Poisson distribution was used to test for an association between fasting triglycerides and incident diabetes. Results: There were 35 incident cases of diabetes among 128 persons without diabetes at baseline. Participants who developed incident type 2 diabetes were significantly older and had significantly higher body mass index (BMI; p=0.012), total cholesterol (p=0.007), fasting triglycerides (p<0.001), and Homeostatic Model Assessment of Insulin Resistance (HOMA-IR) (p<0.001). Fasting triglyceride level was found to be a statistically significant positive predictor of incident diabetes independent of age, sex and waist circumference at baseline. Participants with triglycerides in the highest tertile (≥2.11 mmol/l) had a 4.0-times higher risk of developing incident diabetes compared to those in the lowest tertile (p=0.03). Notably, neither waist circumference nor BMI were significant predictors of incident diabetes independent of age, sex and triglycerides. Conclusion: Fasting triglycerides may be useful as a

75 FR 61765 - National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2010-10-06

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the Diabetes, Endocrinology and Metabolic Diseases B Subcommittee, October 20, 2010, 5...

78 FR 66020 - National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2013-11-04

... DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the Diabetes, Endocrinology and Metabolic Diseases B Subcommittee, October 16, 2013, 05...

Abnormalities in ambulatory blood pressure monitoring in hypertensive patients with diabetes.

PubMed

Gorostidi, Manuel; de la Sierra, Alejandro; González-Albarrán, Olga; Segura, Julián; de la Cruz, Juan J; Vinyoles, Ernest; Llisterri, José L; Aranda, Pedro; Ruilope, Luis M; Banegas, José R

2011-11-01

Our aim was to assess the ambulatory blood pressure monitoring (ABPM) characteristics or patterns in hypertensive patients with diabetes compared with non-diabetic hypertensives. We performed a cross-sectional analysis of a 68,045 patient database from the Spanish Society of Hypertension ABPM Registry, a nation-wide network of >1200 primary-care physicians performing ABPM under standardized conditions in daily practice. We identified 12,600 (18.5%) hypertensive patients with diabetes. When compared with patients without diabetes, diabetic hypertensives exhibited higher systolic blood pressure (BP) levels in every ABPM period (daytime 135.4 vs. 131.8, and nighttime 126.0 vs. 121.0 mm Hg, P<0.001 for both) despite they were receiving more antihypertensive drugs (mean number 1.71 vs. 1.23, P<0.001). Consequently, diabetic patients suffered from lack of control of BP more frequently than non-diabetic subjects particularly during the night (65.5% vs. 57.4%, P<0.001). Prevalence of a non-dipping BP profile (64.2% vs. 51.6%, P<0.001) was higher in diabetic patients. In the other hand, prevalence of 'white-coat' hypertension in diabetic patients was 33.0%. We conclude that there was a remarkably high prevalence of alterations in ABPM in patients with diabetes. Abnormalities in systolic BP, particularly during the night, and in circadian BP pattern could be linked with the excess of BP-related cardiovascular risk of diabetes. A wider use of ABPM in diabetic patients should be considered.

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.

Five-year outcomes of percutaneous versus surgical coronary revascularization in patients with diabetes mellitus (from the CREDO-Kyoto PCI/CABG Registry Cohort-2).

PubMed

Marui, Akira; Kimura, Takeshi; Nishiwaki, Noboru; Mitsudo, Kazuaki; Komiya, Tatsuhiko; Hanyu, Michiya; Shiomi, Hiroki; Tanaka, Shiro; Sakata, Ryuzo

2015-04-15

We investigated the impact of diabetes mellitus on long-term outcomes of percutaneous coronary intervention (PCI) in the drug-eluting stent era versus coronary artery bypass grafting (CABG) in a real-world population with advanced coronary disease. We identified 3,982 patients with 3-vessel and/or left main disease of 15,939 patients with first coronary revascularization enrolled in the Coronary Revascularization Demonstrating Outcome Study in Kyoto PCI/CABG Registry Cohort-2 (patients without diabetes: n = 1,984 [PCI: n = 1,123 and CABG: n = 861], and patients with diabetes: n = 1,998 [PCI: n = 1,065 and CABG: n = 933]). Cumulative 5-year incidence of all-cause death after PCI was significantly higher than after CABG both in patients without and with diabetes (19.8% vs 16.2%, p = 0.01, and 22.9% vs 19.0%, p = 0.046, respectively). After adjusting confounders, the excess mortality risk of PCI relative to CABG was no longer significant (hazard ratio [HR] 1.16; 95% confidence interval [CI] 0.88 to 1.54; p = 0.29) in patients without diabetes, whereas it remained significant (HR 1.31; 95% CI 1.01 to 1.70; p = 0.04) in patients with diabetes. The excess adjusted risks of PCI relative to CABG for cardiac death, myocardial infarction (MI), and any coronary revascularization were significant in both patients without (HR 1.59, 95% CI 1.01 to 2.51, p = 0.047; HR 2.16, 95% CI 1.20 to 3.87, p = 0.01; and HR 3.30, 95% CI 2.55 to 4.25, p <0.001, respectively) and with diabetes (HR 1.45, 95% CI 1.00 to 2.51, p = 0.047; HR 2.31, 95% CI 1.31 to 4.08, p = 0.004; and HR 3.70, 95% CI 2.91 to 4.69, p <0.001, respectively). There was no interaction between diabetic status and the effect of PCI relative to CABG for all-cause death, cardiac death, MI, and any revascularization. In conclusion, in both patients without and with diabetes with 3-vessel and/or left main disease, CABG compared with PCI was associated with better 5-year outcomes in terms of cardiac death, MI, and any coronary

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.

78 FR 55086 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2013-09-09

... Diabetes and Digestive and Kidney Diseases; Notice of Meeting Pursuant to section 10(d) of the Federal... of Diabetes and Digestive and Kidney Diseases, including consideration of personnel qualifications... INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES, NATIONAL INSTITUTE OF HEALTH, BUILDING 5, ROOM B104...

Elevated incidence rates of diabetes in Peru: report from PERUDIAB, a national urban population-based longitudinal study

PubMed Central

Seclen, Segundo Nicolas; Rosas, Moises Ernesto; Arias, Arturo Jaime; Medina, Cecilia Alexandra

2017-01-01

Objective A recent report from a non-nationally representative, geographically diverse sample in four separate communities in Peru suggests an unusually high diabetes incidence. We aimed to estimate the national diabetes incidence rate using PERUDIAB, a probabilistic, national urban population-based longitudinal study. Research design and methods 662 subjects without diabetes, selected by multistage, cluster, random sampling of households, representing the 24 administrative and the 3 (coast, highlands and jungle) natural regions across the country, from both sexes, aged 25+ years at baseline, enrolled in 2010–2012, were followed for 3.8 years. New diabetes cases were defined as fasting blood glucose ≥126 mg/dL or on medical diabetes treatment. Results There were 49 cases of diabetes in 2408 person-years follow-up. The weighted cumulative incidence of diabetes was 7.2% while the weighted incidence rate was estimated at 19.5 (95% CI 13.9 to 28.3) new cases per 1000 person-years. Older age, obesity and technical or higher education were statistically associated with the incidence of diabetes. Conclusion Our results confirm that the incidence of diabetes in Peru is among the highest reported globally. The fast economic growth in the last 20 years, high overweight and obesity rates may have triggered this phenomenon. PMID:28878935

Elevated incidence rates of diabetes in Peru: report from PERUDIAB, a national urban population-based longitudinal study.

PubMed

Seclen, Segundo Nicolas; Rosas, Moises Ernesto; Arias, Arturo Jaime; Medina, Cecilia Alexandra

2017-01-01

A recent report from a non-nationally representative, geographically diverse sample in four separate communities in Peru suggests an unusually high diabetes incidence. We aimed to estimate the national diabetes incidence rate using PERUDIAB, a probabilistic, national urban population-based longitudinal study. 662 subjects without diabetes, selected by multistage, cluster, random sampling of households, representing the 24 administrative and the 3 (coast, highlands and jungle) natural regions across the country, from both sexes, aged 25+ years at baseline, enrolled in 2010-2012, were followed for 3.8 years. New diabetes cases were defined as fasting blood glucose ≥126 mg/dL or on medical diabetes treatment. There were 49 cases of diabetes in 2408 person-years follow-up. The weighted cumulative incidence of diabetes was 7.2% while the weighted incidence rate was estimated at 19.5 (95% CI 13.9 to 28.3) new cases per 1000 person-years. Older age, obesity and technical or higher education were statistically associated with the incidence of diabetes. Our results confirm that the incidence of diabetes in Peru is among the highest reported globally. The fast economic growth in the last 20 years, high overweight and obesity rates may have triggered this phenomenon.

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

Incidence of diabetic foot ulcer in Japanese patients with type 2 diabetes mellitus: The Fukuoka diabetes registry.

PubMed

Iwase, Masanori; Fujii, Hiroki; Nakamura, Udai; Ohkuma, Toshiaki; Ide, Hitoshi; Jodai-Kitamura, Tamaki; Sumi, Akiko; Komorita, Yuji; Yoshinari, Masahito; Kitazono, Takanari

2018-03-01

Although diabetic foot ulcer (DFU) is a serious diabetic complication, there have been no large-scale epidemiological studies of DFU in Japan. We prospectively investigated the incidences of DFU and limb amputation, the risk for developing DFU, and mortality in Japanese patients with type 2 diabetes. We followed 4870 participants (mean age, 65 years) with type 2 diabetes attending an outpatient diabetes clinic for a median of 5.3 years (follow-up rate, 97.7%). The primary outcome was the development of DFU. During the follow-up period, DFU occurred in 74 participants (incidence rate, 2.9/1000 person-years) and limb amputation in 12 (incidence rate, 0.47/1000 person-years). DFU recurrence was observed in 21.4% of participants with history of DFU. History of DFU, chronic kidney disease (estimated glomerular filtration rate <60 mL/min/1.73 m 2 ), depressive symptoms, and poor glycemic control were significant risk factors for developing DFU. Survival was significantly lower in participants with DFU and/or history of DFU compared with those without (5-year survival rates: with DFU, 87.7%, without DFU, 95.3%; P < .0001). The hazard ratio for death was 1.80 (95% confidence interval, 1.13-2.73, P = .014) in those with DFU and/or history of DFU in a multi-adjusted model. The most common cause of death was cardiovascular disease among participants with DFU, whereas it was malignant neoplasm among those without. Incidences of DFU and limb amputation were 0.3% and 0.05% per year in this Japanese cohort, respectively. Mortality significantly increased approximately 2-fold in those with DFU and/or history of DFU compared with those without. Copyright © 2018 Elsevier B.V. All rights reserved.

Discrepancy in term calculation from second trimester ultrasound scan versus last menstrual period in women with type 1 diabetes.

PubMed

Eidem, Ingvild; Vangen, Siri; Henriksen, Tore; Vollset, Stein E; Hanssen, Kristian F; Joner, Geir; Stene, Lars C

2014-08-01

To study differences in ultrasound-based compared to menstrual-based term estimation in women with type 1 diabetes. Nationwide register study. Norway. Deliveries in Norway 1999-2004 by women registered in the Norwegian Childhood Diabetes Registry (n = 342) and the background population (n = 307 248), with data on both ultrasound-based and menstrual-based gestational age notified in the Birth Registry of Norway. Births with major malformations were excluded. Linkage of two nationwide registries, the Medical Birth Registry of Norway and the Norwegian Childhood Diabetes Registry. Estimated gestational age at delivery based on routine second trimester ultrasound measurements and last menstrual period. In women with type 1 diabetes, the distribution of gestational age at delivery was shifted considerably towards a lower gestational age when using second trimester ultrasound data for estimation, compared with last menstrual period data. The difference between the two estimation methods was larger among women with type 1 diabetes, although also evident in the general population. One in four women with diabetes and a certain last menstrual period date had their ultrasound-calculated term postponed 1 week or more, while one in 10 had it postponed 2 weeks or more. Corresponding numbers in the background population were one in five and one in 20. We found a systematic postponement of ultrasound-based compared with menstrual-based term estimation in women with type 1 diabetes. Relying solely on routine ultrasound-based term calculation for delivery decision may imply a risk of going beyond an optimal pregnancy length. © 2014 Nordic Federation of Societies of Obstetrics and Gynecology.

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.

77 FR 50518 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-21

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

76 FR 16432 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-23

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

78 FR 76632 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-12-18

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... personal privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council...

77 FR 2075 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2012-01-13

... Diabetes and Digestive and Kidney Diseases Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

75 FR 49940 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2010-08-16

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... personal privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council...

76 FR 45587 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2011-07-29

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

78 FR 22272 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-04-15

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

78 FR 3903 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-17

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

78 FR 48455 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-08

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Diabetes and Digestive and Kidney Diseases Advisory Council. The meetings will be open to the public as... privacy. Name of Committee: National Diabetes and Digestive and Kidney Diseases Advisory Council. Date...

3 CFR 8592 - Proclamation 8592 of October 29, 2010. National Diabetes Month, 2010

Code of Federal Regulations, 2011 CFR

2011-01-01

... their child’s obesity later in life. With more Americans becoming affected by diabetes and its... its variations. Obesity is one of the most significant risk factors for Type 2 diabetes. National... rates of childhood obesity so all America’s children can grow into healthy, happy, and active adults...

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.

Longitudinal Trajectories of Metabolic Control From Childhood to Young Adulthood in Type 1 Diabetes From a Large German/Austrian Registry: A Group-Based Modeling Approach.

PubMed

Schwandt, Anke; Hermann, Julia M; Rosenbauer, Joachim; Boettcher, Claudia; Dunstheimer, Désirée; Grulich-Henn, Jürgen; Kuss, Oliver; Rami-Merhar, Birgit; Vogel, Christian; Holl, Reinhard W

2017-03-01

Worsening of glycemic control in type 1 diabetes during puberty is a common observation. However, HbA 1c remains stable or even improves for some youths. The aim is to identify distinct patterns of glycemic control in type 1 diabetes from childhood to young adulthood. A total of 6,433 patients with type 1 diabetes were selected from the prospective, multicenter diabetes patient registry Diabetes-Patienten-Verlaufsdokumentation (DPV) (follow-up from age 8 to 19 years, baseline diabetes duration ≥2 years, HbA 1c aggregated per year of life). We used latent class growth modeling as the trajectory approach to determine distinct subgroups following a similar trajectory for HbA 1c over time. Five distinct longitudinal trajectories of HbA 1c were determined, comprising group 1 = 40%, group 2 = 27%, group 3 = 15%, group 4 = 13%, and group 5 = 5% of patients. Groups 1-3 indicated stable glycemic control at different HbA 1c levels. At baseline, similar HbA 1c was observed in group 1 and group 4, but HbA 1c deteriorated in group 4 from age 8 to 19 years. Similar patterns were present in group 3 and group 5. We observed differences in self-monitoring of blood glucose, insulin therapy, daily insulin dose, physical activity, BMI SD score, body-height SD score, and migration background across all HbA 1c trajectories (all P ≤ 0.001). No sex differences were present. Comparing groups with similar initial HbA 1c but different patterns, groups with higher HbA 1c increase were characterized by lower frequency of self-monitoring of blood glucose and physical activity and reduced height (all P < 0.01). Using a trajectory approach, we determined five distinct longitudinal patterns of glycemic control from childhood to early adulthood. Diabetes self-care, treatment differences, and demographics were related to different HbA 1c courses. © 2017 by the American Diabetes Association.

Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks.

PubMed

Gibson, Elaine; Brazil, Kevin; Coughlin, Michael D; Emerson, Claudia; Fournier, Francois; Schwartz, Lisa; Szala-Meneok, Karen V; Weisbaum, Karen M; Willison, Donald J

2008-11-14

The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks

2017 National Standards for Diabetes Self-Management Education and Support.

PubMed

Beck, Joni; Greenwood, Deborah A; Blanton, Lori; Bollinger, Sandra T; Butcher, Marcene K; Condon, Jo Ellen; Cypress, Marjorie; Faulkner, Priscilla; Fischl, Amy Hess; Francis, Theresa; Kolb, Leslie E; Lavin-Tompkins, Jodi M; MacLeod, Janice; Maryniuk, Melinda; Mensing, Carolé; Orzeck, Eric A; Pope, David D; Pulizzi, Jodi L; Reed, Ardis A; Rhinehart, Andrew S; Siminerio, Linda; Wang, Jing

2018-02-01

Purpose The purpose of this study is to review the literature for Diabetes Self-Management Education and Support (DSMES) to ensure the National Standards for DSMES (Standards) align with current evidence-based practices and utilization trends. Methods The 10 Standards were divided among 20 interdisciplinary workgroup members. Members searched the current research for diabetes education and support, behavioral health, clinical, health care environment, technical, reimbursement, and business practice for the strongest evidence that guided the Standards revision. Results Diabetes Self-Management Education and Support facilitates the knowledge, skills, and ability necessary for diabetes self-care as well as activities that assist a person in implementing and sustaining the behaviors needed to manage their condition on an ongoing basis. The evidence indicates that health care providers and people affected by diabetes are embracing technology, and this is having a positive impact of DSMES access, utilization, and outcomes. Conclusion Quality DSMES continues to be a critical element of care for all people with diabetes. The DSMES services must be individualized and guided by the concerns, preferences, and needs of the person affected by diabetes. Even with the abundance of evidence supporting the benefits of DSMES, it continues to be underutilized, but as with other health care services, technology is changing the way DSMES is delivered and utilized with positive outcomes.

2017 National Standards for Diabetes Self-Management Education and Support.

PubMed

Beck, Joni; Greenwood, Deborah A; Blanton, Lori; Bollinger, Sandra T; Butcher, Marcene K; Condon, Jo Ellen; Cypress, Marjorie; Faulkner, Priscilla; Fischl, Amy Hess; Francis, Theresa; Kolb, Leslie E; Lavin-Tompkins, Jodi M; MacLeod, Janice; Maryniuk, Melinda; Mensing, Carolé; Orzeck, Eric A; Pope, David D; Pulizzi, Jodi L; Reed, Ardis A; Rhinehart, Andrew S; Siminerio, Linda; Wang, Jing

2017-10-01

Purpose The purpose of this study is to review the literature for Diabetes Self-Management Education and Support (DSMES) to ensure the National Standards for DSMES (Standards) align with current evidence-based practices and utilization trends. Methods The 10 Standards were divided among 20 interdisciplinary workgroup members. Members searched the current research for diabetes education and support, behavioral health, clinical, health care environment, technical, reimbursement, and business practice for the strongest evidence that guided the Standards revision. Results Diabetes Self-Management Education and Support facilitates the knowledge, skills, and ability necessary for diabetes self-care as well as activities that assist a person in implementing and sustaining the behaviors needed to manage their condition on an ongoing basis. The evidence indicates that health care providers and people affected by diabetes are embracing technology, and this is having a positive impact of DSMES access, utilization, and outcomes. Conclusion Quality DSMES continues to be a critical element of care for all people with diabetes. The DSMES services must be individualized and guided by the concerns, preferences, and needs of the person affected by diabetes. Even with the abundance of evidence supporting the benefits of DSMES, it continues to be underutilized, but as with other health care services, technology is changing the way DSMES is delivered and utilized with positive outcomes.

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

Community-based pre-pregnancy care programme improves pregnancy preparation in women with pregestational diabetes.

PubMed

Yamamoto, Jennifer M; Hughes, Deborah J F; Evans, Mark L; Karunakaran, Vithian; Clark, John D A; Morrish, Nicholas J; Rayman, Gerry A; Winocour, Peter H; Hambling, Clare; Harries, Amanda W; Sampson, Michael J; Murphy, Helen R

2018-05-09

type 2 diabetes (5.8% and 15.1%; p = 0.021). Women with type 1 diabetes presented for earlier antenatal care during/after PPC (54.0% vs 67.3% before 8 weeks' gestation; p = 0.003) with no other changes. A pragmatic community-based PPC programme was associated with clinically relevant improvements in pregnancy preparation in women with type 2 diabetes. To our knowledge, this is the first community-based PPC intervention to improve pregnancy preparation for women with type 2 diabetes. Further details of the data collection methodology, individual clinic data and the full audit reports for healthcare professionals and service users are available from https://digital.nhs.uk/data-and-information/clinical-audits-and-registries/our-clinical-audits-and-registries/national-pregnancy-in-diabetes-audit .

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

Spatial analysis for prevalence of type 2 diabetes mellitus - A state investigation

NASA Astrophysics Data System (ADS)

Zainal, Siti Salsabilah Nabilah; Masnan, Maz Jamilah; Amin, Nor Azrita Mohd; Mohamed, Nordin

2017-11-01

Type 2 Diabetes Mellitus (T2DM) is a chronic and non-communicable disease, which is characterized as the cause of premature deaths in the world. Unfortunately, Malaysia is one of the many countries facing this epidemic. Based on the increasing current trend of T2DM patients' cases from the National Diabetes Registry (NDR) Report from 2009 to 2012, there were approximately 2.6 million adults aged 18 years and above living with diabetes disease in Malaysia. Thus, this study aims to (i) perform preliminary spatial analysis for the prevalence of T2DM patients based on some factors, (ii) map the findings of the analyses according to some spatial properties, and (iii) analyze the pattern of diagnosed T2DM patients based on the studied factors. The studied population is one of the highest prevalence states of T2DM in Malaysia. This study is expected to reveal some demographic patterns that probably significant to this alarming epidemic.

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

PubMed

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

2012-11-01

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

Burden of Mortality Attributable to Diagnosed Diabetes: A Nationwide Analysis Based on Claims Data From 65 Million People in Germany.

PubMed

Jacobs, Esther; Hoyer, Annika; Brinks, Ralph; Kuss, Oliver; Rathmann, Wolfgang

2017-12-01

In Germany, as in many other countries, nationwide data on mortality attributable to diagnosed diabetes are not available. This study estimated the absolute number of excess deaths associated with diabetes (all types) and type 2 diabetes in Germany. A prevalence approach that included nationwide routine data from 64.9 million people insured in the German statutory health insurance system in 2010 was used for the calculation. Because nationwide data on diabetes mortality are lacking in Germany, the mortality rate ratio from the Danish National Diabetes Register was used. The absolute number of excess deaths associated with diabetes was calculated as the number of deaths due to diabetes minus the number of deaths due to diabetes with a mortality that was as high as in the population without diabetes. Furthermore, the mortality population-attributable fraction was calculated. A total of 174,627 excess deaths were due to diabetes in 2010, including 137,950 due to type 2 diabetes. Overall, 21% of all deaths in Germany were attributable to diabetes and 16% were attributable to type 2 diabetes. Most of the excess deaths (34% each) occurred in the 70- to 89-year-old age-group. In this first nationwide calculation of excess deaths related to diabetes in Germany, the results suggest that the official German estimates that rely on information from death certificates are grossly underestimated. Countries without national cohorts or diabetes registries could easily use this method to estimate the number of excess deaths due to diabetes. © 2017 by the American Diabetes Association.

EASD Diabetes Technology Meeting

PubMed Central

2014-01-01

The first diabetes technology meeting organized by the European Diabetes Association covers the range from regulatory aspects, patient safety, about registries to clinical studies. After an intensive discussion about the evidence required for registration and reimbursement on new medical devices and in vitro diagnostics it becomes clear that more and better clinical trials will be required in the future. This was also highlighted by representatives of the American Diabetes Association. The 2 associations will be active in this field of research by a joint committee. This meeting is intended not to become a large-scale meeting focused on education but to provide a platform for an open discussion of experts involved in all areas that are relevant to achieve a meaningful usage of diabetes technology. PMID:24876444

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

TSOC-HFrEF Registry: A Registry of Hospitalized Patients with Decompensated Systolic Heart Failure: Description of Population and Management

PubMed Central

Wang, Chun-Chieh; Chang, Hung-Yu; Yin, Wei-Hsian; Wu, Yen-Wen; Chu, Pao-Hsien; Wu, Chih-Cheng; Hsu, Chih-Hsin; Wen, Ming-Shien; Voon, Wen-Chol; Lin, Wei-Shiang; Huang, Jin-Long; Chen, Shyh-Ming; Yang, Ning-I; Chang, Heng-Chia; Chang, Kuan-Cheng; Sung, Shih-Hsien; Shyu, Kou-Gi; Lin, Jiunn-Lee; Mar, Guang-Yuan; Chan, Kuei-Chuan; Kuo, Jen-Yuan; Wang, Ji-Hung; Chen, Zhih-Cherng; Tseng, Wei-Kung; Cherng, Wen-Jin

2016-01-01

Introduction Heart failure (HF) is a medical condition with a rapidly increasing incidence both in Taiwan and worldwide. The objective of the TSOC-HFrEF registry was to assess epidemiology, etiology, clinical management, and outcomes in a large sample of hospitalized patients presenting with acute decompensated systolic HF. Methods The TSOC-HFrEF registry was a prospective, multicenter, observational survey of patients presenting to 21 medical centers or teaching hospitals in Taiwan. Hospitalized patients with either acute new-onset HF or acute decompensation of chronic HFrEF were enrolled. Data including demographic characteristics, medical history, primary etiology of HF, precipitating factors for HF hospitalization, presenting symptoms and signs, diagnostic and treatment procedures, in-hospital mortality, length of stay, and discharge medications, were collected and analyzed. Results A total of 1509 patients were enrolled into the registry by the end of October 2014, with a mean age of 64 years (72% were male). Ischemic cardiomyopathy and dilated cardiomyopathy were diagnosed in 44% and 33% of patients, respectively. Coronary artery disease, hypertension, diabetes, and chronic renal insufficiency were the common comorbid conditions. Acute coronary syndrome, non-compliant to treatment, and concurrent infection were the major precipitating factors for acute decompensation. The median length of hospital stay was 8 days, and the in-hospital mortality rate was 2.4%. At discharge, 62% of patients were prescribed either angiotensin-converting enzyme-inhibitors or angiotensin receptor blockers, 60% were prescribed beta-blockers, and 49% were prescribed mineralocorticoid receptor antagonists. Conclusions The TSOC-HFrEF registry provided important insights into the current clinical characteristics and management of hospitalized decompensated systolic HF patients in Taiwan. One important observation was that adherence to guideline-directed medical therapy was suboptimal

75 FR 39548 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-09

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting Pursuant to section 10(d) of the... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; Autoimmune Microbiome in Diabetes... Diseases and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

77 FR 53208 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-31

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting Pursuant to section 10(d) of the... of Diabetes and Digestive And Kidney Diseases, including consideration of personnel qualifications..., Ph.D., Scientific Director, National Institute of Diabetes and Digestive and Kidney Diseases...

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.

Establishment of the Fox Chase Network Breast Cancer Risk Registry

DTIC Science & Technology

1996-10-01

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

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.

Disease registries on the nationwide health information network.

PubMed

Russler, Daniel

2011-05-01

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

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.

Association of obesity and long-term mortality in patients with acute myocardial infarction with and without diabetes mellitus: results from the MONICA/KORA myocardial infarction registry.

PubMed

Colombo, Miriam Giovanna; Meisinger, Christa; Amann, Ute; Heier, Margit; von Scheidt, Wolfgang; Kuch, Bernhard; Peters, Annette; Kirchberger, Inge

2015-02-18

Paradoxically, beneficial effects of overweight and obesity on survival have been found in patients after cardiovascular events such as acute myocardial infarction (AMI). This obesity paradox has not been analyzed in AMI patients with diabetes even though their cardiovascular morbidity and mortality is increased compared to their counterparts without diabetes. Therefore, the objective of this long-term study was to analyze the association between body mass index (BMI) and all-cause mortality in AMI patients with and without diabetes mellitus. Included in the study were 1190 patients with and 2864 patients without diabetes, aged 28-74 years, recruited from a German population-based AMI registry. Patients were consecutively hospitalized between 1 January 2000 and 31 December 2008 with a first ever AMI and followed up until December 2011. Data collection comprised standardized interviews and chart reviews. To assess the association between BMI and long-term mortality from all causes, Cox proportional hazards models were calculated adjusted for risk factors, co-morbidities, clinical characteristics, in-hospital complications as well as medical and drug treatment. AMI patients of normal weight (BMI 18.5-24.9 kg/m(2)) had the highest long-term mortality rate both in patients with and without diabetes with 50 deaths per 1000 person years and 26 deaths per 1000 person years, respectively. After adjusting for a selection of covariates, a significant, protective effect of overweight and obesity on all-cause mortality was found in AMI patients without diabetes (overweight: hazard ratio (HR) 0.73, 95% confidence interval (CI) 0.58-0.93; p=0.009; obesity: HR 0.64, 95% CI 0.47-0.87; p=0.004). In contrast, an obesity paradox was not found in AMI patients with diabetes. However, stratified analyses showed survival benefits in overweight AMI patients with diabetes who had been prescribed statins prior to AMI (HR 0.51, 95% CI 0.29-0.89, p=0.018) or four evidence-based medications at

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.

The National Diabetes Education Program at 20 Years: Lessons Learned and Plans for the Future.

PubMed

Siminerio, Linda M; Albright, Ann; Fradkin, Judith; Gallivan, Joanne; McDivitt, Jude; Rodríguez, Betsy; Tuncer, Diane; Wong, Faye

2018-02-01

The National Diabetes Education Program (NDEP) was established to translate findings from diabetes research studies into clinical and public health practice. Over 20 years, NDEP has built a program with partnership engagement that includes science-based resources for multiple population and stakeholder audiences. Throughout its history, NDEP has developed strategies and messages based on communication research and relied on established behavior change models from health education, communication, and social marketing. The program's success in continuing to engage diverse partners after 20 years has led to time-proven and high-quality resources that have been sustained. Today, NDEP maintains a national repository of diabetes education tools and resources that are high quality, science- and audience-based, culturally and linguistically appropriate, and available free of charge to a wide variety of audiences. This review looks back and describes NDEP's evolution in transforming and communicating diabetes management and type 2 diabetes prevention strategies through partnerships, campaigns, educational resources, and tools and identifies future opportunities and plans. © 2018 by the American Diabetes Association.

78 FR 70063 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-11-22

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings Pursuant to section 10(d) of the... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; NIDDK Career Awards Review. Date... cycle. Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special...

78 FR 52937 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-27

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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.

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.

76 FR 10042 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2011-02-23

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75 FR 61766 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2010-10-06

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75 FR 35821 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2010-06-23

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76 FR 25700 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2011-05-05

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77 FR 12857 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2012-03-02

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78 FR 55087 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2013-09-09

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76 FR 78013 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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2011-12-15

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2012-02-17

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2012-08-30

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2011-03-17

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2012-10-22

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2013-02-08

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings Pursuant to section 10(d) of the... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; Beta-Cell Function and Cognition. Date...-5452, (301) 402-7172, [email protected] . Name of Committee: National Institute of Diabetes...

A family history of diabetes is associated with reduced physical fitness in the Prevalence, Prediction and Prevention of Diabetes (PPP)-Botnia study.

PubMed

Isomaa, B; Forsén, B; Lahti, K; Holmström, N; Wadén, J; Matintupa, O; Almgren, P; Eriksson, J G; Lyssenko, V; Taskinen, M-R; Tuomi, T; Groop, L C

2010-08-01

We studied the impact of a family history of type 2 diabetes on physical fitness, lifestyle factors and diabetes-related metabolic factors. The Prevalence, Prediction and Prevention of Diabetes (PPP)-Botnia study is a population-based study in Western Finland, which includes a random sample of 5,208 individuals aged 18 to 75 years identified through the national Finnish Population Registry. Physical activity, dietary habits and family history of type 2 diabetes were assessed by questionnaires and physical fitness by a validated 2 km walking test. Insulin secretion and action were assessed based upon OGTT measurements of insulin and glucose. A family history of type 2 diabetes was associated with a 2.4-fold risk of diabetes and lower physical fitness (maximal aerobic capacity 29.2 +/- 7.2 vs 32.1 +/- 7.0, p = 0.01) despite having similar reported physical activity to that of individuals with no family history. The same individuals also had reduced insulin secretion adjusted for insulin resistance, i.e. disposition index (p < 0.001) despite having higher BMI (27.4 +/- 4.6 vs 26.0 +/- 4.3 kg/m(2), p < 0.001). Individuals with a family history of type 2 diabetes are characterised by lower physical fitness, which cannot solely be explained by lower physical activity. They also have an impaired capacity of beta cells to compensate for an increase in insulin resistance imposed by an increase in BMI. These defects should be important targets for interventions aiming at preventing type 2 diabetes in individuals with inherited susceptibility to the disease.

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.

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.

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

PubMed

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

2013-10-01

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

Baseline characteristics, management practices, and in-hospital outcomes of patients with acute coronary syndromes: Results of the Saudi project for assessment of coronary events (SPACE) registry

PubMed Central

AlHabib, Khalid F.; Hersi, Ahmad; AlFaleh, Hussam; AlNemer, Khalid; AlSaif, Shukri; Taraben, Amir; Kashour, Tarek; Bakheet, Anas; Qarni, Ayed Al; Soomro, Tariq; Malik, Asif; Ahmed, Waqar H.; Abuosa, Ahmed M.; Butt, Modaser A.; AlMurayeh, Mushabab A.; Zaidi, Abdulaziz Al; Hussein, Gamal A.; Balghith, Mohammed A.; Abu-Ghazala, Tareg

2011-01-01

Objectives The Saudi Project for Assessment of Coronary Events (SPACE) registry is the first in Saudi Arabia to study the clinical features, management, and in-hospital outcomes of acute coronary syndrome (ACS) patients. Methods We conducted a prospective registry study in 17 hospitals in Saudi Arabia between December 2005 and December 2007. ACS patients included those with ST-elevation myocardial infarction (STEMI), non-ST elevation myocardial infarction and unstable angina; both were reported collectively as NSTEACS (non-ST elevation acute coronary syndrome). Results 5055 patients were enrolled with mean age ± SD of 58 ± 12.9 years; 77.4% men, 82.4% Saudi nationals; 41.5% had STEMI, and 5.1% arrived at the hospital by ambulance. History of diabetes mellitus was present in 58.1%, hypertension in 55.3%, hyperlipidemia in 41.1%, and 32.8% were current smokers; all these were more common in NSTEACS patients, except for smoking (all P < 0.0001). In-hospital medications were: aspirin (97.7%), clopidogrel (83.7%), beta-blockers (81.6%), angiotensin converting enzyme inhibitors/angiotensin receptor blockers (75.1%), and statins (93.3%). Median time from symptom onset to hospital arrival for STEMI patients was 150 min (IQR: 223), 17.5% had primary percutaneous coronary intervention (PCI), 69.1% had thrombolytic therapy, and 14.8% received it at less than 30 min of hospital arrival. In-hospital outcomes included recurrent myocardial infarction (1.5%), recurrent ischemia (12.6%), cardiogenic shock (4.3%), stroke (0.9%), major bleeding (1.3%). In-hospital mortality was 3.0%. Conclusion ACS patients in Saudi Arabia present at a younger age, have much higher prevalence of diabetes mellitus, less access to ambulance use, delayed treatment by thrombolytic therapy, and less primary PCI compared with patients in the developed countries. This is the first national ACS registry in our country and it demonstrated knowledge-care gaps that require further improvements. PMID

75 FR 33817 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2010-06-15

... Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings Pursuant to section 10(d) of the... Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel, Pathogenic Mechanisms in UTI...) 594-7799, [email protected] . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

Trends in diabetic retinopathy and related medical practices among type 2 diabetes patients: Results from the National Insurance Service Survey 2006-2013.

PubMed

Song, Su Jeong; Han, Kyungdo; Choi, Kyung Seek; Ko, Seung-Hyun; Rhee, Eun-Jung; Park, Cheol-Young; Park, Joong-Yeol; Lee, Ki-Up; Ko, Kyung-Soo

2018-01-01

The present study aimed to analyze the temporal changes in the prevalence, screening rate, visual impairments and treatment patterns of diabetic retinopathy in the Korean population over 8 years. This was a retrospective population-based study of Korean national health insurance beneficiaries aged 30 years or older with type 2 diabetes, obtained from the Korean National Health Insurance Claims database from 2006 to 2013 (n = 1,655,495 in 2006 and 2,720,777 in 2013). The annual prevalence rates of diabetes, diabetic retinopathy, dilated fundus examinations, visual impairment, laser treatment and vitrectomy, as determined based on diagnostic and treatment codes, were analyzed. There was a steady increase in the prevalence of diabetic retinopathy, from 14.3% in 2006 to 15.9% in 2013. However, the incidence of new diabetic retinopathy cases decreased from 6.7/100 person-years in 2006 to 5.6 in 2013. Approximately 98% of patients underwent at least one dilated fundus examination during the follow-up period. The prevalence of diabetic retinopathy peaked in the 60-69 years age group. The prevalence of diabetic retinopathy was higher in female than in male diabetes patients. The proportion of patients who underwent an annual dilated fundus examination improved from 24.3% in 2006 to 30.0% in 2013. Among patients with diabetic retinopathy, constant decreases in the proportions of those who received laser treatment (11.4% in 2006 to 6.9% in 2013) and who underwent vitrectomy (2.4% in 2006 to 1.7% in 2013) were noted. Additionally, a decreasing trend in the prevalence of visual impairment was noted among the patients with diabetic retinopathy, from 2% (4,820/237,267) in 2006 to 0.08% (3,572/431,964) in 2013. Although there was a rapid increase in the prevalence of diabetes in the Korean population in the past decade, the prevalence of diabetic retinopathy remained stable during the study period. However, just three out of 10 patients with diabetes underwent regular annual

Maternal Risk Factors for Preterm Birth in Murmansk County, Russia: A Registry-Based Study.

PubMed

Usynina, Anna A; Postoev, Vitaly A; Grjibovski, Andrej M; Krettek, Alexandra; Nieboer, Evert; Odland, Jon Øyvind; Anda, Erik Eik

2016-09-01

Globally, about 11% of all liveborn infants are preterm. To date, data on prevalence and risk factors of preterm birth (PTB) in Russia are limited. The aims of this study were to estimate the prevalence of PTB in Murmansk County, Northwestern Russia and to investigate associations between PTB and selected maternal factors using the Murmansk County Birth Registry. We conducted a registry-based study of 52 806 births (2006-2011). In total, 51 156 births were included in the prevalence analysis, of which 3546 were PTBs. Odds ratios with 95% confidence intervals of moderate-to-late PTB, very PTB and extremely PTB for a range of maternal characteristics were estimated using multinomial logistic regression, adjusting for potential confounders. The overall prevalence of PTB in Murmansk County was 6.9%. Unmarried status, prior PTBs, spontaneous and induced abortions were strongly associated with PTB at any gestational age. Maternal low educational level increased the risk of extremely and moderate-to-late PTB. Young (<18 years) or older (≥35 years) mothers, graduates of vocational schools, underweight, overweight/obese mothers, and smokers were at higher risk of moderate-to-late PTB. Secondary education, alcohol abuse, diabetes mellitus, or gestational diabetes were strongly associated with moderate-to-late and very PTB. The observed prevalence of PTB (6.9%) in Murmansk County, Russia was comparable with data on live PTB from European countries. Adverse prior pregnancy outcomes, maternal low educational level, unmarried status, alcohol abuse, and diabetes mellitus or gestational diabetes were the most common risk factors for PTB. © 2016 John Wiley & Sons Ltd.

Diabetes Prevalence in Sweden at Present and Projections for Year 2050

PubMed Central

Andersson, Tomas; Ahlbom, Anders; Carlsson, Sofia

2015-01-01

Background Data on the future diabetes burden in Scandinavia is limited. Our aim was to project the future burden of diabetes in Sweden by modelling data on incidence, prevalence, mortality, and demographic factors. Method To project the future burden of diabetes we used information on the prevalence of diabetes from the national drug prescription registry (adults ≥20 years), previously published data on relative mortality in people with diabetes, and population demographics and projections from Statistics Sweden. Alternative scenarios were created based on different assumptions regarding the future incidence of diabetes. Results Between 2007 and 2013 the prevalence of diabetes rose from 5.8 to 6.8% in Sweden but incidence remained constant at 4.4 per 1000 (2013). With constant incidence and continued improvement in relative survival, prevalence will increase to 10.4% by year 2050 and the number of afflicted individuals will increase to 940 000. Of this rise, 30% is accounted for by changes in the age structure of the population and 14% by improved relative survival in people with diabetes. A hypothesized 1% annual rise in incidence will result in a prevalence of 12.6% and 1 136 000 cases. Even with decreasing incidence at 1% per year, prevalence of diabetes will continue to increase. Conclusion We can expect diabetes prevalence to rise substantially in Sweden over the next 35 years as a result of demographic changes and improved survival among people with diabetes. A dramatic reduction in incidence is required to prevent this development. PMID:26619340

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.

National Differences in Remission of Type 2 Diabetes Mellitus After Roux-en-Y Gastric Bypass Surgery-Subgroup Analysis of 2-Year Results of the Diabetes Surgery Study Comparing Taiwanese with Americans with Mild Obesity (BMI 30-35 kg/m2).

PubMed

Chong, Keong; Ikramuddin, Sayeed; Lee, Wei-Jei; Billington, Charles J; Bantle, John P; Wang, Qi; Thomas, Avis J; Connett, John E; Leslie, Daniel B; Inabnet, William B; Jeffery, Robert W; Sarr, Michael G; Jensen, Michael D; Vella, Adrian; Ahmed, Leaque; Belani, Kumar; Schone, Joyce L; Olofson, Amy E; Bainbridge, Heather A; Laqua, Patricia S; Korner, Judith; Chuang, Lee-Ming

2017-05-01

The purpose of this study is to compare effects of different nations on Roux-en-Y gastric bypass (RYGB) vs. intensive medical management (IMM) in achieving remission of type 2 diabetes mellitus (T2DM). Between April 2008 and December 2011, this randomized, controlled clinical trial was conducted at four teaching hospitals in the United States and Taiwan involving 71 participants with mild obesity (BMI 30-35 kg/m 2 ). Thirty-six of 71 participants were randomly assigned to the RYGB group, and the others were in IMM group. Partial or complete remission of T2DM was defined as blood HbA1c < 6.5 % (48 mmol/mol) or <6 % (42 mmol/mol) without any antihyperglycemic medication for at least 1-year duration, respectively. At baseline, Taiwanese participants had a lower BMI, younger age, and shorter duration of T2DM than American participants. At 24 months, weight loss was greater in the RYGB group in both populations than in the IMM group. No IMM participant of either population had partial or complete remission of T2DM. In the RYGB group, a substantial proportion of the subjects achieved complete or partial remission (57 % in Taiwanese and 27 % in American participants, P = 0.08). Logistic regression revealed stimulated C-peptide (Odds ratio 2.22, P = 0.02) but not nationality as a significant predictor of diabetes remission. Adding RYGB to lifestyle and medical management was associated with a greater likelihood of remission of T2DM in both Taiwanese and American subjects with mild obesity with type 2 diabetes. Residual beta-cell function at baseline appears to be the major factor predicting remission of T2DM. Trial registry number: clinicaltrials.gov Identifier: NCT00641251.

Improved diabetes management in Swedish schools: results from two national surveys.

PubMed

Särnblad, Stefan; Åkesson, Karin; Fernström, Lillemor; Ilvered, Rosita; Forsander, Gun

2017-09-01

Support in diabetes self-care in school is essential to achieve optimal school performance and metabolic control. Swedish legislation regulating support to children with chronic diseases was strengthened 2009. To compare the results of a national survey conducted 2008 and 2015 measuring parents' and diabetes specialist teams' perceptions of support in school. All pediatric diabetes centers in Sweden were invited to participate in the 2015 study. In each center, families with a child being treated for T1DM and attending preschool class or compulsory school were eligible. The parents' and the diabetes teams' opinions were collected in two separate questionnaires. Forty-one out of 42 eligible diabetes centers participated and 568 parents answered the parental questionnaire in 2015. Metabolic control had improved since the 2008 survey (55.2 ± 10.6 mmol/mol, 7.2% ± 1.0%, in 2015 compared with 61.8 ± 12.4 mmol/mol, 7.8% ± 1.1% in 2008). The proportion of children with a designated staff member responsible for supporting the child's self-care increased from 43% to 59%, (P < .01). An action plan to treat hypoglycemia was present for 65% of the children in 2015 compared with 55% in 2008 (P < .01). More parents were satisfied with the support in 2015 (65% compared with 55%, P < .01). This study shows that staff support has increased and that more parents were satisfied with the support for self-care in school in 2015 compared with 2008. More efforts are needed to implement the national legislation to achieve equal support in all Swedish schools. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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.

Epidemiology of childhood diabetes mellitus in Japan.

PubMed

Tajima, Naoko; Morimoto, Aya

2012-10-01

The incidence of type 1 diabetes mellitus (T1DM) in Japan among those below 15 years of age is reportedly 1.5-2.5 per 100,000; however, population-based data have not been available in recent years. Although the incidence of T1DM in Japan is extremely low compared with that in Caucasians, the vast majority of Japanese children who are diagnosed with diabetes before the age of 10 years have T1DM. The incidence of type 2 diabetes mellitus (T2DM) in childhood is approximately 3.0 per 100,000, with the figure among junior high school children being 3-6 times higher than that among primary school children. The most common type of diabetes in children appears to shift from T1DM to T2DM with advancing age, especially after puberty. The mortality risk of patients with childhood-onset T1DM diagnosed between 1965 and 1979 is 12.9-fold higher than that of the general population. However, due to efforts aimed at improving medical care and ameliorating the effects of diabetes among children and adolescents, the standardized mortality ratio (SMR) has declined markedly over the past 30 years. The progression of complications in T2DM appears to be more rapid than that in T1DM, primarily due to the number of drop-out cases. Therefore, appropriate education and treatment programs are necessary to protect against diabetic complications in the younger generation. The establishment of an ongoing population-based national T1DM and T2DM registry system is critical for identifying risk factors associated with diabetes and its complications.

Cause-specific mortality in Scottish patients with colorectal cancer with and without type 2 diabetes (2000-2007).

PubMed

Walker, J J; Brewster, D H; Colhoun, H M; Fischbacher, C M; Lindsay, R S; Wild, S H

2013-07-01

The objective of this study was to use Scottish national data to assess the influence of type 2 diabetes on (1) survival (overall and cause-specific) in multiple time intervals after diagnosis of colorectal cancer and (2) cause of death. Data from the Scottish Cancer Registry were linked to data from a population-based national diabetes register. All people in Scotland diagnosed with non-metastatic cancer of the colon or rectum in 2000-2007 were included. The effect of pre-existing type 2 diabetes on survival over four discrete time intervals (<1, 1-2, 3-5 and >5 years) after cancer diagnosis was assessed by Cox regression. Cumulative incidence functions were calculated representing the respective probabilities of death from the competing causes of colorectal cancer, cardiovascular disease, other cancers and any other cause. Data were available for 19,505 people with colon or rectal cancer (1,957 with pre-existing diabetes). Cause-specific mortality analyses identified a stronger association between diabetes and cardiovascular disease mortality than that between diabetes and cancer mortality. Beyond 5 years after colon cancer diagnosis, diabetes was associated with a detrimental effect on all-cause mortality after adjustment for age, socioeconomic status and cancer stage (HR [95% CI]: 1.57 [1.19, 2.06] in men; 1.84 [1.36, 2.50] in women). For patients with rectal cancer, diabetes was not associated with differential survival in any time interval. Poorer survival observed for colon cancer associated with type 2 diabetes in Scotland may be explained by higher mortality from causes other than cancer.

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.

Blood pressure indices and cardiovascular disease mortality in persons with or without diabetes mellitus.

PubMed

Gomadam, Pallavi; Shah, Amit; Qureshi, Waqas; Yeboah, Phyllis N; Freedman, Barry I; Bowden, Donald; Soliman, Elsayed Z; Yeboah, Joseph

2018-01-01

We examined the associations between blood pressure indices (SBP, DBP, mean arterial pressure and pulse pressure) and cardiovascular disease (CVD) mortality among persons with or without diabetes mellitus (NON-DM) in a multiethnic cohort. We included 17 650 participants from National Health and Nutrition Examination Survey III and 1439 participants from Diabetes Heart Study (total n = 19 089, 16.3% had diabetes mellitus, mean age 48.5 years, 44.4% white, 27.1% black, 28.5% other race, 54.4% women). Cox proportional hazard, cubic spline and area under the curve analyses were used to assess the associations. CVD death was ascertained via social security registry or the National Death Index. After a mean (SD) of 16.2 (6.1) years of follow-up, 17.9% of diabetes mellitus and 8.8% of those NON-DM died of CVD. Diabetes mellitus was associated with an increased risk of CVD death [hazard ratio (95% confidence interval): 1.50 (1.25-1.82)]. One SD increase in SBP was significantly associated with CVD mortality in NON-DM [1.28 (1.18-1.39)] but not diabetes mellitus [1.04 (0.88-1.23)] in the full Cox models. Adjusted cubic spline analysis showed significant nonlinear but different association between SBP and CVD mortality among diabetes mellitus (U-shaped) and NON-DM (J-shaped). The C-statistics of our full model in NON-DM and diabetes mellitus were (0.888 vs. 0.735, P < 0.001). SBP showed a trend toward improving C statistics in NON-DM but not diabetes mellitus. The association between SBP and CVD mortality risk is nonlinear but different in diabetes mellitus (U-shaped) and NON-DM (J-shaped), explaining why aggressive blood pressure lowering may have different outcomes in these two groups.

Beyond health information technology: critical factors necessary for effective diabetes disease management.

PubMed

Ciemins, Elizabeth L; Coon, Patricia J; Fowles, Jinnet Briggs; Min, Sung-joon

2009-05-01

Electronic health records (EHRs) have been implemented throughout the United States with varying degrees of success. Past EHR implementation experiences can inform health systems planning to initiate new or expand existing EHR systems. Key "critical success factors," e.g., use of disease registries, workflow integration, and real-time clinical guideline support, have been identified but not fully tested in practice. A pre/postintervention cohort analysis was conducted on 495 adult patients selected randomly from a diabetes registry and followed for 6 years. Two intervention phases were evaluated: a "low-dose" period targeting primary care provider (PCP) and patient education followed by a "high-dose" EHR diabetes management implementation period, including a diabetes disease registry and office workflow changes, e.g., diabetes patient preidentification to facilitate real-time diabetes preventive care, disease management, and patient education. Across baseline, "low-dose," and "high-dose" postintervention periods, a significantly greater proportion of patients (a) achieved American Diabetes Association (ADA) guidelines for control of blood pressure (26.9 to 33.1 to 43.9%), glycosylated hemoglobin (48.5 to 57.5 to 66.8%), and low-density lipoprotein cholesterol (33.1 to 44.4 to 56.6%) and (b) received recommended preventive eye (26.2 to 36.4 to 58%), foot (23.4 to 40.3 to 66.9%), and renal (38.5 to 53.9 to 71%) examinations or screens. Implementation of a fully functional, specialized EHR combined with tailored office workflow process changes was associated with increased adherence to ADA guidelines, including risk factor control, by PCPs and their patients with diabetes. Incorporation of previously identified "critical success factors" potentially contributed to the success of the program, as did use of a two-phase approach. 2009 Diabetes Technology Society.

The European Renal Association - European Dialysis and Transplant Association Registry Annual Report 2014: a summary.

PubMed

Pippias, Maria; Kramer, Anneke; Noordzij, Marlies; Afentakis, Nikolaos; Alonso de la Torre, Ramón; Ambühl, Patrice M; Aparicio Madre, Manuel I; Arribas Monzón, Felipe; Åsberg, Anders; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Bubic, Ivan; Caskey, Fergus J; Castro de la Nuez, Pablo; Cernevskis, Harijs; de Los Ángeles Garcia Bazaga, Maria; des Grottes, Jean-Marin; Fernández González, Raquel; Ferrer-Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; Heaf, James G; Hemmelder, Marc H; Idrizi, Alma; Ioannou, Kyriakos; Jarraya, Faical; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Lassalle, Mathilde; Lezaic, Visnja V; Lopot, Frantisek; Macario, Fernando; Magaz, Ángela; Martín de Francisco, Angel L; Martín Escobar, Eduardo; Martínez Castelao, Alberto; Metcalfe, Wendy; Moreno Alia, Inmaculada; Nordio, Maurizio; Ots-Rosenberg, Mai; Palsson, Runolfur; Ratkovic, Marina; Resic, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Seyahi, Nurhan; Fernanda Slon Roblero, María; Spustova, Viera; Stas, Koenraad J F; Stendahl, María E; Stojceva-Taneva, Olivera; Vazelov, Evgueniy; Ziginskiene, Edita; Massy, Ziad; Jager, Kitty J; Stel, Vianda S

2017-04-01

Background: This article summarizes the European Renal Association - European Dialysis and Transplant Association Registry's 2014 annual report. It describes the epidemiology of renal replacement therapy (RRT) for end-stage renal disease (ESRD) in 2014 within 35 countries. Methods: In 2016, the ERA-EDTA Registry received data on patients who in 2014 where undergoing RRT for ESRD, from 51 national or regional renal registries. Thirty-two registries provided individual patient level data and 19 provided aggregated patient level data. The incidence, prevalence and survival probabilities of these patients were determined. Results: In 2014, 70 953 individuals commenced RRT for ESRD, equating to an overall unadjusted incidence rate of 133 per million population (pmp). The incidence ranged by 10-fold; from 23 pmp in the Ukraine to 237 pmp in Portugal. Of the patients commencing RRT, almost two-thirds were men, over half were aged ≥65 years and a quarter had diabetes mellitus as their primary renal diagnosis. By day 91 of commencing RRT, 81% of patients were receiving haemodialysis. On 31 December 2014, 490 743 individuals were receiving RRT for ESRD, equating to an unadjusted prevalence of 924 pmp. This ranged throughout Europe by more than 10-fold, from 157 pmp in the Ukraine to 1794 pmp in Portugal. In 2014, 19 406 kidney transplantations were performed, equating to an overall unadjusted transplant rate of 36 pmp. Again this varied considerably throughout Europe. For patients commencing RRT during 2005-09, the 5-year-adjusted patient survival probabilities on all RRT modalities was 63.3% (95% confidence interval 63.0-63.6). The expected remaining lifetime of a 20- to 24-year-old patient with ESRD receiving dialysis or living with a kidney transplant was 21.9 and 44.0 years, respectively. This was substantially lower than the 61.8 years of expected remaining lifetime of a 20-year-old patient without ESRD.

Ethnic differences in the occurrence of acute coronary syndrome: results of the Malaysian National Cardiovascular Disease (NCVD) Database Registry (March 2006 - February 2010)

PubMed Central

2013-01-01

Background The National Cardiovascular Disease (NCVD) Database Registry represents one of the first prospective, multi-center registries to treat and prevent coronary artery disease (CAD) in Malaysia. Since ethnicity is an important consideration in the occurrence of acute coronary syndrome (ACS) globally, therefore, we aimed to identify the role of ethnicity in the occurrence of ACS among high-risk groups in the Malaysian population. Methods The NCVD involves more than 15 Ministry of Health (MOH) hospitals nationwide, universities and the National Heart Institute and enrolls patients presenting with ACS [ST-elevation myocardial infarction (STEMI), non-ST elevation myocardial infarction (NSTEMI) and unstable angina (UA)]. We analyzed ethnic differences across socio-demographic characteristics, hospital medications and invasive therapeutic procedures, treatment of STEMI and in-hospital clinical outcomes. Results We enrolled 13,591 patients. The distribution of the NCVD population was as follows: 49.0% Malays, 22.5% Chinese, 23.1% Indians and 5.3% Others (representing other indigenous groups and non-Malaysian nationals). The mean age (SD) of ACS patients at presentation was 59.1 (12.0) years. More than 70% were males. A higher proportion of patients within each ethnic group had more than two coronary risk factors. Malays had higher body mass index (BMI). Chinese had highest rate of hypertension and hyperlipidemia. Indians had higher rate of diabetes mellitus (DM) and family history of premature CAD. Overall, more patients had STEMI than NSTEMI or UA among all ethnic groups. The use of aspirin was more than 94% among all ethnic groups. Utilization rates for elective and emergency percutaneous coronary intervention (PCI) and coronary artery bypass graft (CABG) were low among all ethnic groups. In STEMI, fibrinolysis (streptokinase) appeared to be the dominant treatment options (>70%) for all ethnic groups. In-hospital mortality rates for STEMI across ethnicity ranges

Ethnic differences in the occurrence of acute coronary syndrome: results of the Malaysian National Cardiovascular Disease (NCVD) Database Registry (March 2006 - February 2010).

PubMed

Lu, Hou Tee; Nordin, Rusli Bin

2013-11-06

The National Cardiovascular Disease (NCVD) Database Registry represents one of the first prospective, multi-center registries to treat and prevent coronary artery disease (CAD) in Malaysia. Since ethnicity is an important consideration in the occurrence of acute coronary syndrome (ACS) globally, therefore, we aimed to identify the role of ethnicity in the occurrence of ACS among high-risk groups in the Malaysian population. The NCVD involves more than 15 Ministry of Health (MOH) hospitals nationwide, universities and the National Heart Institute and enrolls patients presenting with ACS [ST-elevation myocardial infarction (STEMI), non-ST elevation myocardial infarction (NSTEMI) and unstable angina (UA)]. We analyzed ethnic differences across socio-demographic characteristics, hospital medications and invasive therapeutic procedures, treatment of STEMI and in-hospital clinical outcomes. We enrolled 13,591 patients. The distribution of the NCVD population was as follows: 49.0% Malays, 22.5% Chinese, 23.1% Indians and 5.3% Others (representing other indigenous groups and non-Malaysian nationals). The mean age (SD) of ACS patients at presentation was 59.1 (12.0) years. More than 70% were males. A higher proportion of patients within each ethnic group had more than two coronary risk factors. Malays had higher body mass index (BMI). Chinese had highest rate of hypertension and hyperlipidemia. Indians had higher rate of diabetes mellitus (DM) and family history of premature CAD. Overall, more patients had STEMI than NSTEMI or UA among all ethnic groups. The use of aspirin was more than 94% among all ethnic groups. Utilization rates for elective and emergency percutaneous coronary intervention (PCI) and coronary artery bypass graft (CABG) were low among all ethnic groups. In STEMI, fibrinolysis (streptokinase) appeared to be the dominant treatment options (>70%) for all ethnic groups. In-hospital mortality rates for STEMI across ethnicity ranges from 8.1% to 10.1% (p = 0

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.

75 FR 3741 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2010-01-22

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Digestive and Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee..., [email protected] . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

78 FR 9063 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2013-02-07

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Digestive and Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee... . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Initial Review...

75 FR 56117 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-15

... Diabetes and Digestive and Kidney Diseases; Notice of Meetings Pursuant to section 10(d) of the Federal... Digestive and Kidney Diseases Initial Review Group, Kidney, Urologic and Hematologic Diseases D Subcommittee.... [email protected] . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

77 FR 28890 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2012-05-16

... Diabetes and Digestive and Kidney Diseases Notice of Meetings Pursuant to section 10(d) of the Federal... Digestive and Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee..., [email protected] . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

Obesity and type 2 diabetes mellitus in a birth cohort of First Nation children born to mothers with pediatric-onset type 2 diabetes.

PubMed

Mendelson, Michael; Cloutier, Justin; Spence, Louise; Sellers, Elizabeth; Taback, Shayne; Dean, Heather

2011-05-01

Children who are born to mothers with pediatric-onset type 2 diabetes mellitus are exposed to a hyperglycemic intra-uterine environment throughout pregnancy. The growth patterns and risk of type 2 diabetes in these offspring may be influenced by unique gene-environment interactions during intra-uterine and postnatal life. We established a cohort of offspring of First Nation mothers with onset of type 2 diabetes before age 18 years in Manitoba, Canada. We measured height or length and weight at study entry and annually thereafter with fasting blood glucose in offspring aged ≥ 7 years. We collected birth and breastfeeding history and determined the population-specific hepatic nuclear factor-1α (HNF-1α) G319S genotype of offspring at age 7 years. From July 2003 to April 2008, we enrolled 76 offspring of 37 mothers. Sixty-four percent (23/36) of the offspring aged 2-19 years were obese at initial assessment. The rates of obesity remained constant throughout the 5 years. As of April 2008, 7/28 (25%) of the offspring aged 7-19 years have diabetes including 6/14 (43%) aged 10-19 years. Most offspring with diabetes (5/7, 71%) were obese at diagnosis. All of the 7 offspring with diabetes have 1 or 2 copies of the G319S polymorphism. The prevalence of type 2 diabetes in this cohort of offspring of First Nation women with pediatric-onset type 2 diabetes is the highest ever reported. Obesity is an important postnatal risk factor for type 2 diabetes in this population and may result from a unique gene-environment interaction. © 2011 John Wiley & Sons A/S.

Using multi-year national survey cohorts for period estimates: an application of weighted discrete Poisson regression for assessing annual national mortality in US adults with and without diabetes, 2000-2006.

PubMed

Cheng, Yiling J; Gregg, Edward W; Rolka, Deborah B; Thompson, Theodore J

2016-12-15

Monitoring national mortality among persons with a disease is important to guide and evaluate progress in disease control and prevention. However, a method to estimate nationally representative annual mortality among persons with and without diabetes in the United States does not currently exist. The aim of this study is to demonstrate use of weighted discrete Poisson regression on national survey mortality follow-up data to estimate annual mortality rates among adults with diabetes. To estimate mortality among US adults with diabetes, we applied a weighted discrete time-to-event Poisson regression approach with post-stratification adjustment to national survey data. Adult participants aged 18 or older with and without diabetes in the National Health Interview Survey 1997-2004 were followed up through 2006 for mortality status. We estimated mortality among all US adults, and by self-reported diabetes status at baseline. The time-varying covariates used were age and calendar year. Mortality among all US adults was validated using direct estimates from the National Vital Statistics System (NVSS). Using our approach, annual all-cause mortality among all US adults ranged from 8.8 deaths per 1,000 person-years (95% confidence interval [CI]: 8.0, 9.6) in year 2000 to 7.9 (95% CI: 7.6, 8.3) in year 2006. By comparison, the NVSS estimates ranged from 8.6 to 7.9 (correlation = 0.94). All-cause mortality among persons with diabetes decreased from 35.7 (95% CI: 28.4, 42.9) in 2000 to 31.8 (95% CI: 28.5, 35.1) in 2006. After adjusting for age, sex, and race/ethnicity, persons with diabetes had 2.1 (95% CI: 2.01, 2.26) times the risk of death of those without diabetes. Period-specific national mortality can be estimated for people with and without a chronic condition using national surveys with mortality follow-up and a discrete time-to-event Poisson regression approach with post-stratification adjustment.

Current national patterns of comorbid diabetes among acute ischemic stroke patients.

PubMed

Towfighi, Amytis; Markovic, Daniela; Ovbiagele, Bruce

2012-01-01

Type 2 diabetes rates in the general population have risen with the growing obesity epidemic. Knowledge of temporal patterns and factors associated with comorbid diabetes among stroke patients may enable health practitioners and policy makers to develop interventions aimed at reducing diabetes rates, which may consequently lead to declines in stroke incidence and improvements in stroke outcomes. Using the Nationwide Inpatient Sample (NIS), a nationally representative data set of US hospital admissions, we assessed trends in the proportion of acute ischemic stroke (AIS) patients with comorbid diabetes from 1997 to 2006. Independent factors associated with comorbid diabetes were evaluated using multivariable logistic regression. Over the study period, the absolute number of AIS hospitalizations declined by 17% (from 489,766 in 1997 to 408,378 in 2006); however, the absolute number of AIS hospitalizations with comorbid type 2 diabetes rose by 27% [from 97,577 (20%) in 1997 to 124,244 (30%) in 2006, p < 0.001]. The rise in comorbid diabetes over time was more pronounced in patients who were relatively younger, Black or 'other' race, on Medicaid, or admitted to hospitals located in the South. Factors independently associated with higher odds of diabetes in AIS patients were Black or 'other' versus White race, congestive heart failure, peripheral vascular disease, history of myocardial infarction, renal disease and hypertension. Although hospitalizations for AIS in the US decreased from 1997 to 2006, there was a steep rise in the proportion with comorbid diabetes (from 1 in 5 to almost 1 in 3). Specific patient populations may be potential targets for mitigating this trend. Copyright © 2012 S. Karger AG, Basel.

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

Central Diabetes Insipidus: A Previously Unreported Side Effect of Temozolomide

PubMed Central

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

2013-01-01

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

Antidiabetic pharmacotherapy and anamnestic hypoglycemia in a large cohort of type 2 diabetic patients - an analysis of the DiaRegis registry

PubMed Central

2011-01-01

Background We aimed to identify predictors of anamnestic hypoglycaemia in type-2 diabetic patients on oral mono- or dual oral combination antidiabetic pharmacotherapy. Methods DiaRegis is a prospective registry in type-2 diabetic patients in primary care. Odds ratios (OR) with 95% confidence intervals were determined from univariate logistic regression. Using multivariate logistic regression analysis with stepwise backward selection at an alpha of 0.05 independent predictors of hypoglycaemia were determined. Results 3,808 patients had data on hypoglycaemia available (median age 65.9 years, 46.6% female). 10.8% had at least one anamnestic hypoglycaemic episode within the previous 12 months. Patients with hypoglycaemia received more sulfonylureas (OR 2.16; 95%CI 1.75-2.67) and less metformin (OR 0.64; 95%CI 0.50-0.82). On top of metformin, patients with thiazolidine (OR 0.50; 95%CI 0.28-0.89) and DPP-4 inhibitor use (OR 0.34; 95%CI 0.16-0.70) had a decreased risk for hypoglycaemia while it was again increased with sulfonylureas (OR 2.08; 95%CI 1.44-2.99). Age < 65 years was an independent predictor of a reduced hypoglycaemia incidence (OR 0.76; 95%CI 0.59-0.96), low HbA1c (OR 1.68; 95%CI 1.31-2.14), stroke/TIA (OR 1.72; 95%CI 1.08-2.72), heart failure (OR 1.77; 95%CI 1.28-2.45), and the use of sulfonylureas (OR 2.58; 95%CI 2.03-3.29) were independent predictors of increased risk. Conclusions The results indicate that the risk of hypoglycaemia might be substantially reduced by carefully selecting antidiabetic pharmacotherapy in patients with type-2 diabets in primary care. PMID:21756359

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.

Diabetes on the Navajo nation: what role can gardening and agriculture extension play to reduce it?

PubMed

Lombard, Kevin A; Forster-Cox, Susan; Smeal, Dan; O'Neill, Mick K

2006-01-01

Diabetes has emerged as a serious health problem in the Navajo nation, the largest Indigenous tribe in the US. Persons with diabetes are at greater risk for developing other diseases such as cardiovascular disease. Navajos with diabetes almost certainly face a diminished quality of life if their diabetes is not managed properly. Aside from genetics, the incidence of diabetes is highly correlated with income, poor diet, and limited physical exercise. A review of the literature also implicates dietary shifts initiated by historical events and contemporary trends. Numerous studies have shown that moderate consumption of fruits and vegetables, combined with exercise, reduces the risk of or delays the onset of many diseases including diabetes. As part of a larger holistic approach, home and community garden projects have successfully addressed nutrition and food security issues on a grassroots scale. The Navajos have a tradition of farming and therefore expanding Navajo diabetes interventions to include the promotion of community and home gardens provides multiple opportunities. The benefits of these actions include: (i) a variety of nutritious food grown locally; (ii) physical activity attained through the act of daily gardening tasks; (iii) positive income garnered in terms of savings in food otherwise purchased at stores and excess produce canned, or if desired, sold at a farmer's market or trading post; and (iv) positive mental outlook through a combined sense of accomplishment at harvest time, bonding with the earth, and spiritual growth. The objectives of this article were to review the development of diabetes on the Navajo nation though historical and contemporary literature, to provide insight into the role of diet and exercise in the progression of the disease, and to offer cases and suggestions in the role that home and community gardening can play in diabetes reduction. A concluding discussion proposes a multidisciplinary approach to tackling diabetes on the

Ascertainment of Outpatient Visits by Patients with Diabetes: The National Ambulatory Medical Care Survey (NAMCS) and the National Hospital Ambulatory Medical Care Survey (NHAMCS)

PubMed Central

Asao, Keiko; McEwen, Laura N.; Lee, Joyce M.; Herman, William H.

2015-01-01

Aims To estimate and evaluate the sensitivity and specificity of providers’ diagnosis codes and medication lists to identify outpatient visits by patients with diabetes. Methods We used data from the 2006 to 2010 National Ambulatory Medical Care Survey and National Hospital Ambulatory Medical Care Survey. We assessed the sensitivity and specificity of providers’ diagnoses and medication lists to identify patients with diabetes, using the checkbox for diabetes as the gold standard. We then examined differences in sensitivity by patients’ characteristics using multivariate logistic regression models. Results The checkbox identified 12,647 outpatient visits by adults with diabetes among the 70,352 visits used for this analysis. The sensitivity and specificity of providers’ diagnoses or listed diabetes medications were 72.3% (95% CI: 70.8% to 73.8%) and 99.2% (99.1% to 99.4%), respectively. Diabetic patients ≥75 years pf age, women, non-Hispanics, and those with private insurance or Medicare were more likely to be missed by providers’ diagnoses and medication lists. Diabetic patients who had more diagnosis codes and medications recorded, had glucose or hemoglobin A1c measured, or made office- rather than hospital-outpatient visits were less likely to be missed. Conclusions Providers’ diagnosis codes and medication lists fail to identify approximately one quarter of outpatient visits by patients with diabetes. PMID:25891975

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