Welch Alice E
Full Text Available Abstract Background Many individuals who have 9/11-related physical and mental health symptoms do not use or are unaware of 9/11-related health care services despite extensive education and outreach efforts by the World Trade Center (WTC Health Registry (the Registry and various other organizations. This study sought to evaluate Registry enrollees’ perceptions of the relationship between physical and mental health outcomes and 9/11, as well as utilization of and barriers to 9/11-related health care services. Methods Six focus groups were conducted in January 2010 with diverse subgroups of enrollees, who were likely eligible for 9/11-related treatment services. The 48 participants were of differing race/ethnicities, ages, and boroughs of residence. Qualitative analysis of focus group transcripts was conducted using open coding and the identification of recurring themes. Results Participants described a variety of physical and mental symptoms and conditions, yet their knowledge and utilization of 9/11 health care services were low. Participants highlighted numerous barriers to accessing 9/11 services, including programmatic barriers (lack of program visibility and accessibility, personal barriers such as stigmatization and unfamiliarity with 9/11-related health problems and services, and a lack of referrals from their primary care providers. Moreover, many participants were reluctant to connect their symptoms to the events of 9/11 due to lack of knowledge, the amount of time that had elapsed since 9/11, and the attribution of current health symptoms to the aging process. Conclusions Knowledge of the barriers to 9/11-related health care has led to improvements in the Registry’s ability to refer eligible enrollees to appropriate treatment programs. These findings highlight areas for consideration in the implementation of the new federal WTC Health Program, now funded under the James Zadroga 9/11 Health and Compensation Act (PL 111-347, which
Rose, Sherri; Bergquist, Savannah L; Layton, Timothy J
Health insurers may attempt to design their health plans to attract profitable enrollees while deterring unprofitable ones. Such insurers would not be delivering socially efficient levels of care by providing health plans that maximize societal benefit, but rather intentionally distorting plan benefits to avoid high-cost enrollees, potentially to the detriment of health and efficiency. In this work, we focus on a specific component of health plan design at risk for health insurer distortion in the Health Insurance Marketplaces: the prescription drug formulary. We introduce an ensembled machine learning function to determine whether drug utilization variables are predictive of a new measure of enrollee unprofitability we derive, and thus vulnerable to distortions by insurers. Our implementation also contains a unique application-specific variable selection tool. This study demonstrates that super learning is effective in extracting the relevant signal for this prediction problem, and that a small number of drug variables can be used to identify unprofitable enrollees. The results are both encouraging and concerning. While risk adjustment appears to have been reasonably successful at weakening the relationship between therapeutic-class-specific drug utilization and unprofitability, some classes remain predictive of insurer losses. The vulnerable enrollees whose prescription drug regimens include drugs in these classes may need special protection from regulators in health insurance market design. © The Author 2017. Published by Oxford University Press.
... use of other forms of information technology. Title: Survey of Veteran Enrollees' Health and Reliance... on population-based budget formulation, policy scenario testing, and strategic planning. Affected... AFFAIRS Proposed Information Collection (Survey of Veteran Enrollees' Health and Reliance Upon VA...
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
The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health
Yunjie Song PhD
Full Text Available This article examines the differences in mortality measured health status between the Medicare Advantage (MA program and Fee-for-Service (FFS program from 1999 to 2007. At the national level, differences in mortality rates were associated with MA market share. In some counties, enrollees in the MA program were 40% less likely to die than their peers in the FFS program, but in other counties, they were 20% more likely to die. Cost shifting between the two programs could bias county classifications of average FFS spending, and enlarged disparities in health status could make it difficult to evaluate risk adjusters.
Taylor, Erin A; Saltzman, Evan; Bauhoff, Sebastian; Pacula, Rosalie L; Eibner, Christine
Federal subsidies available to enrollees in health insurance Marketplaces are pegged to the premium of the second-lowest-cost silver plan available in each rating area (as defined by each state). People who qualify for the subsidy contribute a percentage of their income to purchase coverage, and the federal government covers the remaining cost up to the price of that premium. Because the number of plans offered and plan premiums vary substantially across rating areas, the effective value of the subsidy may vary geographically. We found that the availability of more plans in a rating area was associated with lower premiums but higher deductibles for enrollees in the second-lowest-cost silver plan. In rating areas with more than twenty plans, the average deductible in the second-lowest-cost silver plan was nearly $1,000 higher than it was in rating areas with fewer than thirteen plans. Because premium costs for second-lowest-cost silver plans are capped, deductibles may be a more salient measure of plan value for enrollees than premiums are. Greater standardization of plans or an alternative approach to calculating the subsidy could provide a more consistent benefit to enrollees across various rating areas. Project HOPE—The People-to-People Health Foundation, Inc.
Meng, Y Y; Jatulis, D E; McDonald, J P; Legorreta, A P
This study was designed to determine the levels and predictors of Medicare enrollees' satisfaction with access to medical care and quality of health care in a health maintenance organization. Data collected by an instrument adapted from the Group Health Association of America's Consumer Satisfaction Survey were analyzed after being linked with administrative data. In general, Medicare enrollees reported high satisfaction with both access to and quality of health care. Most members (96%) rated skill, experience, and training of physicians and the friendliness and courtesy of the staff favorably. A lower percentage of members (77%) rated favorably the ability to contact a physician after hours. Levels of satisfaction were essentially not explained by patient characteristics such as age, sex, geographic region, medications, or utilization. Stepwise regression identified the ease of arranging appointments as the strongest predictor of satisfaction, with access to care and outcomes of medical care as the strongest predictor of overall satisfaction with quality of health care. These findings indicate that items that members rated least favorably, such as ability to contact a physician after hours, added little to the prediction of satisfaction with access to and quality of health care.
Burton, Lynda C; Skinner, Elizabeth A; Uscher-Pines, Lori; Lieberman, Richard; Leff, Bruce; Clark, Rebecca; Yu, Qilu; Lemke, Klaus W; Weiner, Jonathan P
To assess the effects of Hurricane Katrina on mortality, morbidity, disease prevalence, and service utilization during 1 year in a cohort of 20,612 older adults who were living in New Orleans, Louisiana, before the disaster and who were enrolled in a managed care organization (MCO). Observational study comparing mortality, morbidity, and service use for 1 year before and after Hurricane Katrina, augmented by a stratified random sample of 303 enrollees who participated in a telephone survey after Hurricane Katrina. Sources of data for health and service use were MCO claims. Mortality was based on reports to the MCO from the Centers for Medicare & Medicaid Services; morbidity was measured using adjusted clinical groups case-mix methods derived from diagnoses in ambulatory and hospital claims data. Mortality in the year following Hurricane Katrina was not significantly elevated (4.3% before vs 4.9% after the hurricane). However, overall morbidity increased by 12.6% (P Hurricane Katrina on this vulnerable population. Although quick rebuilding of the provider network may have attenuated more severe health outcomes for this managed care population, new policies must be introduced to deal with the health consequences of a major disaster.
Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y
The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.
... 42 Public Health 4 2010-10-01 2010-10-01 false Enrollee information. 438.218 Section 438.218 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES... and Operation Standards § 438.218 Enrollee information. The requirements that States must meet...
U.S. Department of Health & Human Services — Today there are over 10 million Medicare-Medicaid enrollees in the United States.To provide a greater understanding of the Medicare-Medicaid enrollee population, the...
U.S. Department of Health & Human Services — Today there are over 10 million Medicare-Medicaid enrollees in the United States.To provide a greater understanding of the Medicare-Medicaid enrollee population,...
Full Text Available Abstract Background There is no national joint replacement registry in the country of Asia and reports of national outcomes of joint replacement in Asia as yet. Therefore, this study was then to report a national data of the number of hip replacements, incidence rate, demographic characteristics of hip replacement patients, and short-time survival rate after hip replacement of Han Chinese in Taiwan. Methods We analyzed 105,688 cases of hip replacements (including primary partial hip replacement, primary total hip replacement and revision of hip replacement from National Health Insurance research database between 1996 and 2004. The survival rate of primary hip replacement was estimated for each disease by the Kaplan-Meier method. Results Average annual number of primary partial hip replacement and primary total hip replacement were 4,257 and 6,206 cases, respectively. The most two common diagnosis of primary partial hip replacement were femoral neck fractures (73.6%, 34% men, mean age 76 years and avascular necrosis (18.0%, 84% men, mean age 48 years. In primary total hip replacements, the most two common diagnosis were avascular necrosis (46.9%, 79% men, mean age 50 years and osteoarthrosis (41.6%, 43% men, mean age 60 years. Both the number of primary partial hip replacements and primary total hip replacements increased steadily between 1996 and 2004. The cumulative survival of primary partial hip replacements and primary total hip replacements in all patients were 93.97% and 79.47% in 9 years follow-up, respectively. Conclusion Avascular necrosis is the main disease in total hip replacement in Taiwan. The epidemiology of hip diseases was different between Han Chinese (in Taiwan and Caucasian and the number of hip replacements increased substantially in Taiwan between 1996 and 2004.
Galbraith Alison A
Full Text Available Abstract Background Recent increases in patient cost-sharing for health care have lent increasing importance to monitoring cost-related changes in health care use. Despite the widespread use of survey questions to measure changes in health care use and related behaviors, scant data exists on the reliability of such questions. Methods We administered a cross-sectional survey to a stratified random sample of families in a New England health plan's high deductible health plan (HDHP with ≥ $500 in annualized out-of-pocket expenditures. Enrollees were asked about their knowledge of their plan, information seeking, behavior change associated with having a deductible, experience of delay in care due in part to cost, and hypothetical delay in care due in part to cost. Initial respondents were mailed a follow-up survey within two weeks of each family returning the original survey. We computed several agreement statistics to measure the test-retest reliability for select questions. We also conducted continuity adjusted chi-square, and McNemar tests in both the original and follow-up samples to measure the degree to which our results could be reproduced. Analyses were stratified by self-reported income. Results The test-retest reliability was moderate for the majority of questions (0.41 - 0.60 and the level of test-retest reliability did not differ substantially across each of the broader domains of questions. The observed proportions of respondents with delayed or foregone pediatric, adult, or any family care were similar when comparing the original and follow-up surveys. In the original survey, respondents in the lower-income group were more likely to delay or forego pediatric care, adult care, or any family care. All of the tests comparing income groups in the follow-up survey produced the same result as in the original survey. Conclusions In this population of HDHP beneficiaries, we found that survey questions concerning plan knowledge, information
... Close Home > Medicaid > Benefits > Dental Care Dental Care Dental Care Dental Care for Medicaid and CHIP Enrollees Dental health ... services and opportunities and challenges to obtaining care. Dental Benefits for Children in Medicaid Medicaid covers dental ...
Department of Veterans Affairs — The VA's Veteran Health Administration, in support of the Open Data Initiative, is providing the number of Veteran enrollees by state/county for fiscal year 2015....
Malinoff, Rochelle L; Elliott, Marc N; Giordano, Laura A; Grace, Susan C; Burroughs, James N
The obese, with disproportionate chronic disease incidence, consume a large share of health care resources and drive up per capita Medicare spending. This study examined the prevalence of obesity and its association with health status, health-related quality of life (HRQOL), function, and outpatient utilization among Medicare Advantage seniors. Results indicate that obese beneficiaries, much more than overweight beneficiaries, have poorer health, functions, and HRQOL than normal weight beneficiaries and have substantially higher outpatient utilization. While weight loss is beneficial to both the overweight and obese, the markedly worse health status and high utilization of obese beneficiaries may merit particular attention.
Caramanica, Kimberly; Brackbill, Robert M; Liao, Tim; Stellman, Steven D
Many studies report elevated prevalence of posttraumatic stress disorder (PTSD) and depression among persons exposed to the September 11, 2001 (9/11) disaster compared to those unexposed; few have evaluated long-term PTSD with comorbid depression. We examined prevalence and risk factors for probable PTSD, probable depression, and both conditions 10-11 years post-9/11 among 29,486 World Trade Center Health Registry enrollees who completed surveys at Wave 1 (2003-2004), Wave 2 (2006-2007), and Wave 3 (2011-2012). Enrollees reporting physician diagnosed pre-9/11 PTSD or depression were excluded. PTSD was defined as scoring ≥ 44 on the PTSD Checklist and depression as scoring ≥ 10 on the 8-item Patient Health Questionnaire. We examined 4 groups: comorbid PTSD and depression, PTSD only, depression only, and neither. Among enrollees, 15.2% reported symptoms indicative of PTSD at Wave 3, 14.9% of depression, and 10.1% of both. Comorbid PTSD and depression was associated with high 9/11 exposures, low social integration, health-related unemployment, and experiencing ≥ 1 traumatic life event post-9/11. Comorbid persons experienced poorer outcomes on all PTSD-related impairment measures, life satisfaction, overall health, and unmet mental health care need compared to those with only a single condition. These findings highlight the importance of ongoing screening and treatment for both conditions, particularly among those at risk for mental health comorbidity.
O'Malley, Jean P; O'Keeffe-Rosetti, Maureen; Lowe, Robert A; Angier, Heather; Gold, Rachel; Marino, Miguel; Hatch, Brigit; Hoopes, Megan; Bailey, Steffani R; Heintzman, John; Gallia, Charles; DeVoe, Jennifer E
Although past research demonstrated that Medicaid expansions were associated with increased emergency department (ED) and primary care (PC) utilization, little is known about how long this increased utilization persists or whether postcoverage utilization is affected by prior insurance status. (1) To assess changes in ED, PC, mental and behavioral health care, and specialist care visit rates among individuals gaining Medicaid over 24 months postinsurance gain; and (2) to evaluate the association of previous insurance with utilization. Using claims data, we conducted a retrospective cohort analysis of adults insured for 24 months following Oregon's 2008 Medicaid expansion. Utilization rates among 1124 new and 1587 returning enrollees were compared with those among 5126 enrollees with continuous Medicaid coverage (≥1 y preexpansion). Visit rates were adjusted for propensity score classes and geographic region. PC visit rates in both newly and returning insured individuals significantly exceeded those in the continuously insured in months 4 through 12, but were not significantly elevated in the second year. In contrast, ED utilization rates were significantly higher in returning insured compared with newly or continuously insured individuals and remained elevated over time. New visits to PC and specialist care were higher among those who gained Medicaid compared with the continuously insured throughout the study period. Predicting the effect of insurance expansion on health care utilization should account for the prior coverage history of new enrollees. In addition, utilization of outpatient services changes with time after insurance, so expansion evaluations should allow for rate stabilization.
to be less healthy and less well-off financially than the general civilian population (Ahga et al., 2000). The health needs of VA patients with...Glied S, Remler DK, Zivin JG. Inside the sausage factory: Improving estimates of the effects of health insurance expansion proposals. Milbank Q
... collected on VA Form 10-0479 will be used to improve customer service processes for Veterans applying for health care benefits. VA will use this information to determine the quality of customer service given to...)'' in any correspondence. FOR FURTHER INFORMATION CONTACT: Denise McLamb, Enterprise Records...
Harwood, Jessica M; Azocar, Francisca; Thalmayer, Amber; Xu, Haiyong; Ong, Michael K; Tseng, Chi-Hong; Wells, Kenneth B; Friedman, Sarah; Ettner, Susan L
The federal Mental Health Parity and Addiction Equity Act (MHPAEA) sought to eliminate historical disparities between insurance coverage for behavioral health (BH) treatment and coverage for medical treatment. Our objective was to evaluate MHPAEA's impact on BH expenditures and utilization among "carve-in" enrollees. We received specialty BH insurance claims and eligibility data from Optum, sampling 5,987,776 adults enrolled in self-insured plans from large employers. An interrupted time series study design with segmented regression analysis estimated monthly time trends of per-member spending and use before (2008-2009), during (2010), and after (2011-2013) MHPAEA compliance (N=179,506,951 member-month observations). Outcomes included: total, plan, patient out-of-pocket spending; outpatient utilization (assessment/diagnostic evaluation visits, medication management, individual and family psychotherapy); intermediate care utilization (structured outpatient, day treatment, residential); and inpatient utilization. MHPAEA was associated with increases in monthly per-member total spending, plan spending, assessment/diagnostic evaluation visits [respective immediate increases of: $1.05 (P=0.02); $0.88 (P=0.04); 0.00045 visits (P=0.00)], and individual psychotherapy visits [immediate increase of 0.00578 visits (P=0.00) and additional increases of 0.00017 visits/mo (P=0.03)]. MHPAEA was associated with modest increases in total and plan spending and outpatient utilization; for example, in July 2012 predicted per-enrollee plan spending was $4.92 without MHPAEA and $6.14 with MHPAEA. Efforts should focus on understanding how other barriers to BH care unaddressed by MHPAEA may affect access/utilization. Future research should evaluate effects produced by the Affordable Care Act's inclusion of BH care as an essential health benefit and expansion of MHPAEA protections to the individual and small group markets.
... 42 Public Health 4 2010-10-01 2010-10-01 false Enrollee rights. 438.100 Section 438.100 Public...).) (iv) Participate in decisions regarding his or her health care, including the right to refuse... scope of the PAHP's contracted services) has the right to be furnished health care services...
Gunja, Munira Z; Collins, Sara R; Blumenthal, David; Doty, Michelle M; Beutel, Sophie
ISSUE: The number of Americans insured by Medicaid has climbed to more than 70 million, with an estimated 12 million gaining coverage under the Affordable Care Act’s Medicaid expansion. Still, some policymakers have questioned whether Medicaid coverage actually improves access to care, quality of care, or financial protection. GOALS: To compare the experiences of working-age adults who were either: covered all year by private employer or individual insurance; covered by Medicaid for the full year; or uninsured for some time during the year. METHOD: Analysis of the Commonwealth Fund Biennial Health Insurance Survey, 2016. FINDINGS AND CONCLUSIONS: The level of access to health care that Medicaid coverage provides is comparable to that afforded by private insurance. Adults with Medicaid coverage reported better care experiences than those who had been uninsured during the year. Medicaid enrollees have fewer problems paying medical bills than either the privately insured or the uninsured.
Scott, Anna Mae
Objective Health technology assessment (HTA) is a process of assessing evidence to inform policy decisions about public subsidy of new drugs and medical procedures. Where evidence is uncertain but the technology itself is promising, funders may recommend funding on an interim basis. It is unknown whether evidence from clinical registries is used to resolve uncertainties identified in interim-funded decisions made by Australian HTA bodies. Therefore, the present study evaluated the role of evidence from clinical registries in resolving evidence uncertainties identified by the Medical Services Advisory Committee (MSAC).Methods All HTAs considered by MSAC between 1998 and 2015 were reviewed and assessments that recommended interim funding were identified. The MSAC website was searched to identify reassessments of these recommendations and sources of evidence used to resolve the uncertainties were identified.Results Of 173 HTA reports considered by MSAC, 17 (10%) contained an interim funding recommendation. Eight recommendations cited uncertainty around safety, 15 cited uncertainty around clinical effectiveness and 13 cited uncertainty around economics (cost-effectiveness and/or budget impact). Of the 17 interim funding recommendations, 11 (65%) have been reassessed. Only two reassessments relied on clinical registry evidence to resolve evidence gaps identified at the time of the interim funding recommendation.Conclusions Clinical registries are underused as a source of evidence for resolving uncertainties around promising new health technologies in Australia. An open dialogue between stakeholders on the role of registries in this context is needed.What is known about the topic? HTA is a process of assessing the evidence to inform policy decisions about public subsidy of new health technologies (e.g. pharmaceuticals, diagnostic tests, medical procedures). Where evidence is uncertain but the technology under evaluation is promising, funders may recommend the funding of
Welch, Alice E.; Caramanica, Kimberly; Maslow, Carey B.; Cone, James E.; Farfel, Mark R.; Keyes, Katherine M.; Stellman, Steven D.; Hasin, Deborah S.
Background Exposure to 9/11 may have considerable long-term impact on health behaviors, including increased alcohol consumption. We examined the association between frequent binge drinking, posttraumatic stress disorder (PTSD), and number of 9/11-specific experiences among World Trade Center Health Registry (Registry) enrollees five-to-six years after 9/11. Methods Participants included 41,284 lower Manhattan residents, workers, passers-by, and rescue/recovery workers aged 18 or older without a pre-9/11 PTSD diagnosis who completed Wave 1 (2003–2004) and Wave 2 (2006–2007) interviews. Frequent binge drinking was defined as consuming five or more drinks on five or more occasions in the prior 30 days at Wave 2. Probable PTSD was defined as scoring 44 or greater on the PTSD Checklist. 9/11 exposure was measured as the sum of 12 experiences and grouped as none/low (0–1), medium (2–3), high (4–5) and very high (6+). Results Frequent binge drinking was significantly associated with increasing 9/11 exposure and PTSD. Those with very high and high exposures had a higher prevalence of frequent binge drinking (13.7% and 9.8%, respectively) than those with medium and low exposures (7.5% and 4.4%, respectively). Upon stratification, very high and high exposures were associated with frequent binge drinking in both the PTSD and no PTSD subgroups. Conclusions Our findings suggest that 9/11 exposure had an impact on frequent binge drinking five-to-six years later among Registry enrollees. Understanding the effects of traumatic exposure on alcohol use is important to identify risk factors for post-disaster alcohol misuse, inform policy, and improve post-disaster psychological and alcohol screening and counseling. PMID:24831753
... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...
U.S. Department of Health & Human Services — Baugh and Verghese used unduplicated Medicaid enrollment records for 2005-2007 to examine enrollee migration between states. This study, published in Volume 3, Issue...
Choi, Bernard C.K.; Frank, John; Mindell, Jennifer S.; Orlova, Anna; Lin, Vivian; Vaillancourt, Alain D.M.G.; Puska, Pekka; Pang, Tikki; Skinner, Harvey A.; Marsh, Marsha; Mokdad, Ali H.; Yu, Shun-Zhang; Lindner, M. Cristina; Sherman, Gregory; Barreto, Sandhi M.; Green, Lawrence W.; Svenson, Lawrence W.; Sainsbury, Peter; Yan, Yongping; Zhang, Zuo-Feng; Zevallos, Juan C.; Ho, Suzanne C.; de Salazar, Ligia M.
In public health, the generation, management, and transfer of knowledge all need major improvement. Problems in generating knowledge include an imbalance in research funding, publication bias, unnecessary studies, adherence to fashion, and undue interest in novel and immediate issues. Impaired generation of knowledge, combined with a dated and inadequate process for managing knowledge and an inefficient system for transferring knowledge, mean a distorted body of evidence available for decisionmaking in public health. This article hopes to stimulate discussion by proposing a Global Registry of Anticipated Public Health Studies. This prospective, comprehensive system for tracking research in public health could help enhance collaboration and improve efficiency. Practical problems must be discussed before such a vision can be further developed. PMID:17413073
... participate in decisions regarding his or her health care, including the right to refuse treatment, and to... 42 Public Health 4 2010-10-01 2010-10-01 false Provider-enrollee communications. 438.102 Section 438.102 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND...
Elam, Angela R; Andrews, Chris; Musch, David C; Lee, Paul P; Stein, Joshua D
To determine whether the type of health insurance a patient possesses and a patient's race/ethnicity affect receipt of common tests to monitor open-angle glaucoma (OAG). Retrospective longitudinal cohort study. A total of 21 766 persons aged ≥40 years with newly diagnosed OAG between 2007 and 2011 enrolled in Medicaid or a large United States managed care network. We determined the proportion of patients with newly diagnosed OAG who underwent visual field (VF) testing, fundus photography (FP), other ocular imaging (OOI), or none of these tests within the first 15 months after initial OAG diagnosis. Multivariable logistic regression was used to assess the extent by which health insurance type and race/ethnicity affected the odds of undergoing glaucoma testing. Odds ratios (OR) of undergoing VF testing, FP, OOI, or none of these tests in the 15 months after initial OAG diagnosis with 95% confidence intervals (CI). A total of 18 372 persons with commercial health insurance and 3394 Medicaid recipients met the study inclusion criteria. The proportions of persons with commercial health insurance with newly diagnosed OAG who underwent VF, FP, and OOI were 63%, 22%, and 54%, respectively, whereas the proportions were 35%, 19%, and 30%, respectively, for Medicaid recipients. Compared with those with commercial health insurance, Medicaid recipients were 234% more likely to not receive any glaucoma testing in the 15 months after initial diagnosis (OR = 3.34; 95% CI, 3.07-3.63). After adjustment for confounders, whites with OAG enrolled in Medicaid had 198% higher odds of receiving no glaucoma testing compared with whites possessing commercial health insurance (OR = 2.98; 95% CI, 2.66-3.33). Blacks with Medicaid insurance demonstrated 291% higher odds (OR = 3.91; 95% CI, 3.40-4.49) of not receiving any glaucoma testing compared with blacks with commercial health insurance. Irrespective of race/ethnicity, Medicaid recipients with OAG are receiving substantially less
U.S. Department of Health & Human Services — The Nanomaterial Registry compiles data from multiple databases into a single resource. The goal of this resource is to establish a curated nanomaterial registry,...
Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn
The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.
... 42 Public Health 3 2010-10-01 2010-10-01 false Special rules for certain enrollees of risk HMOs and CMPs. 417.444 Section 417.444 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT... Medicare Contract § 417.444 Special rules for certain enrollees of risk HMOs and CMPs. (a)...
Hadler, Max W; Chen, Xiao; Gonzalez, Erik; Roby, Dylan H
HMO enrollees with limited English proficiency, and particularly those in poorer health, face communication barriers despite language assistance regulations. More than 1.3 million California HMO enrollees ages 18 to 64 do not speak English well enough to communicate with medical providers and may experience reduced access to high-quality health care if they do not receive appropriate language assistance services. Based on analysis of the 2007 and 2009 California Health Interview Surveys (CHIS), commercial HMO enrollees with limited English proficiency (LEP) in poorer health are more likely to have difficulty understanding their doctors, placing this already vulnerable population at even greater risk. The analysis also uses CHIS to examine the potential impact of health plan monitoring starting in 2009 (due to a 2003 amendment to the Knox-Keene Health Care Services Act) requiring health plans to provide free qualified interpretation and translation services to HMO enrollees. The authors recommend that California's health plans continue to incorporate trained interpreters into their contracted networks and delivery systems, paying special attention to enrollees in poorer health. The results may serve as a planning tool for health plans, providing a detailed snapshot of enrollee characteristics that will help design effective programs now and prepare for a likely increase in insured LEP populations in the future, as full implementation of the Affordable Care Act takes place over the next decade.
Ordoñana, Juan R; Sánchez Romera, Juan F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan J; Morosoli-García, José J; Pérez-Riquelme, Francisco; Martínez-Selva, José M
Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies basically compare the degree of phenotypical similarity between monozygotic and dizygotic twin pairs. In addition to the traditional estimate of heritability, this kind of registry enables a wide variety of analyses which are unique due to the characteristics of the sample. The Murcia Twin Registry is population-based and focused on the analysis of health-related behaviour. The observed prevalence of health problems is comparable to that of other regional and national reference samples, which guarantees its representativeness. Overall, the characteristics of the Registry facilitate developing various types of research as well as genetically informative designs, and collaboration with different initiatives and consortia. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.
Alzoebie, A; Belhani, M; Eshghi, P; Kupesiz, A O; Ozelo, M; Pompa, M T; Potgieter, J; Smith, M
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.
Hinman, Alan R; Ross, David A
Electronic health records and health information exchanges are necessary components of the information infrastructure to support a reformed health care system. However, they are not sufficient by themselves. Merely summing data from electronic health records together will not provide a comprehensive picture of the population, which is essential for tracking disease trends and treatment outcomes. Public health information systems such as immunization registries are an essential component of the information infrastructure and will allow assessment of the impact of changes in health care on the population as a whole.
Banerjee, Samprit; Cafri, Guy; Isaacs, Abby J; Graves, Stephen; Paxton, Elizabeth; Marinac-Dabic, Danica; Sedrakyan, Art
The International Consortium for Orthopaedic Registries is a multinational initiative established by the United States Food and Drug Administration to develop a health data network aimed at providing a robust infrastructure to facilitate evidence-based decision-making on performance of medical devices. Through the International Consortium for Orthopaedic Registries, individual data holders have complete control of their data and can choose to participate in studies of their choice. In this article, we present an overview of the data extraction process and the analytic strategy employed to answer several device performance-related questions in total hip arthroplasty and total knee arthroplasty. In the process, we discuss some nuances pertinent to International Consortium for Orthopaedic Registries data that pose certain statistical challenges, and we briefly suggest strategies to be adopted to address them.
Leitsalu, Liis; Alavere, Helene; Tammesoo, Mari-Liis; Leego, Erkki; Metspalu, Andres
The Estonian population-based biobank, with 52,000 participants' genetic and health data, is the largest epidemiological cohort in the Baltic region. Participants were recruited through a network of medical professionals throughout Estonia (population 1.34 million). Unique legislation as well as a broad consent form give the Estonian Genome Center, a research institute of the University of Tartu, permission to re-contact participants and to retrieve participants' data from national registries and databases. In addition to two re-contacting projects to update the health data of participants, extensive clinical characterizations have been retrieved from national registries and hospital databases regularly since 2010. Acquiring data from electronic health records and registries has provided a means to update and enhance the database of the Genome Center in a timely manner and at low cost. The resulting database allows a wide spectrum of genomic and epidemiological research to be conducted with the aim of benefitting public health. Future plans include linking the genome center database with the national health information system through X-road and exchanging data in real time, as well as using the genetic data and the technical infrastructure available for piloting personalized medicine in Estonia.
Siesling, S.; Louwman, W.J.; Kwast, A.; Hurk, van den C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.
Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the
Blewett, Lynn A; Lukanen, Elizabeth; Call, Kathleen T; Dahlen, Heather
Several provisions of the Affordable Care Act make state and federal high-risk pools unnecessary beginning in January 2014. As a result, thousands of enrollees in those pools will be transferred to Medicaid and the new state and federal insurance exchanges. Our study analyzed new survey data collected from enrollees in the country's oldest and largest state-based high-risk pool, the Minnesota Comprehensive Health Association. We estimate that approximately half of the enrollees in that pool will qualify for Medicaid or premium subsidies in the exchange. More than 60 percent of the enrollees reported being somewhat or very unfamiliar with health care reform and the resulting changes to their current coverage. Their concerns about the expected impact of health reform varied by income, geography, and level of deductible. Targeting education and outreach information to address these concerns will be critical for this population's smooth transition to new coverage.
Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource for Patient-Reported Outcomes Research in Older Adults with Cancer.
Kent, Erin E; Malinoff, Rochelle; Rozjabek, Heather M; Ambs, Anita; Clauser, Steven B; Topor, Marie A; Yuan, Gigi; Burroughs, James; Rodgers, Anne B; DeMichele, Kimberly
Researchers and clinicians are increasingly recognizing the value of patient-reported outcome (PRO) data to better characterize people's health and experiences with illness and care. Considering the rising prevalence of cancer in adults aged 65 and older, PRO data are particularly relevant for older adults with cancer, who often require complex cancer care and have additional comorbid conditions. A data linkage between the Surveillance Epidemiology and End Results (SEER) cancer registry and the Medicare Health Outcomes Survey (MHOS) was created through a partnership between the National Cancer Institute and the Centers for Medicare and Medicaid Services that created the opportunity to examine PROs in Medicare Advantage enrollees with and without cancer. The December 2013 linkage of SEER-MHOS data included the linked data for 12 cohorts, bringing the number of individuals in the linked data set to 95,723 with cancer and 1,510,127 without. This article reviews the features of the resource and provides information on some descriptive characteristics of the individuals in the data set (health-related quality of life, body mass index, fall risk management, number of unhealthy days in the past month). Individuals without (n=258,108) and with (n=3,440) cancer (1,311 men with prostate cancer, 982 women with breast cancer, 689 with colorectal cancer, 458 with lung cancer) were included in the current descriptive analysis. Given increasing longevity, advances in effective therapies and earlier detection, and population growth, the number of individuals aged 65 and older with cancer is expected to reach more than 12 million by 2020. SEER-MHOS provides population-level, self-reported, cancer registry-linked data for person-centered surveillance research on this growing population.
Al-Rubeaan, Khalid A; Youssef, Amira M; Subhani, Shazia N; Ahmad, Najlaa A; Al-Sharqawi, Ahmad H; Ibrahim, Heba M
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
Kannan, Vaishnavi; Fish, Jason S; Mutz, Jacqueline M; Carrington, Angela R; Lai, Ki; Davis, Lisa S; Youngblood, Josh E; Rauschuber, Mark R; Flores, Kathryn A; Sara, Evan J; Bhat, Deepa G; Willett, DuWayne L
Creation of a new electronic health record (EHR)-based registry often can be a "one-off" complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care. To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development. We adopted as guiding principles to (a) capture data as a byproduct of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed - either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM) - were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined "grains" from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display
Friedman, Bernard; Jiang, H Joanna
The hospitals selected by or for Medicare beneficiaries might depend on whether the patient is enrolled in a Medicare Advantage (MA) plan. A theoretical model of profit maximization by MA plans takes into account the tradeoffs of consumer preferences for annual premium versus outcomes of care in the hospital and other attributes of the plan. Hospital discharge databases for 13 states in 2006, maintained by the Agency for Healthcare Research and Quality, are the main source of data. Risk-adjusted mortality rates are available for all non-maternity adult patients in each of 15 clinical categories in about 1,500 hospitals. All-adult postoperative safety event rates covering 9 categories of events are calculated for surgical cases in about 900 hospitals. Instrumental variables are used to address potential endogeneity of the choice of a MA plan. The key findings are these: enrollees in MA plans tend to be treated in hospitals with lower resource cost and higher risk-adjusted mortality compared to Fee-for-Service (FFS) enrollees. The risk-adjusted mortality measure is about 1.5 percentage points higher for MA plan enrollees than the overall mean of 4%. However, the rate of safety events in surgical patients favors MA plan enrollees--the rate is 1 percentage point below the average of 3.5%. These discrepant results are noteworthy and are plausibly due to greater discretion by the health plan in approving patients for elective surgery and as well as selecting hospitals for surgical patients. Emergency patients are generally excluded for the safety outcome measures. In addition, the current mortality measures may not adequately represent all surgical patients. Such caveats should be prominently highlighted when presenting comparative data. With that proviso, the study justifies informing Medicare beneficiaries about the mortality and safety outcome measures for hospitals being used by a MA plan compared to hospitals used by FFS enrollees.
Fung, Vicki; Liang, Catherine Y; Donelan, Karen; Peitzman, Cassandra G K; Dow, William H; Zaslavsky, Alan M; Fireman, Bruce; Derose, Stephen F; Chernew, Michael E; Newhouse, Joseph P; Hsu, John
The Affordable Care Act includes financial assistance that reduces both premiums and cost-sharing amounts for lower-income Americans, to increase the affordability of health insurance coverage and care. To receive both types of assistance, enrollees must purchase a qualified health plan through a public insurance exchange, and those eligible for the cost-sharing reduction must purchase a silver-tier plan. We estimate that 31 percent of individual-market enrollees in California who were likely eligible for financial assistance purchased plans that were not silver tier or that were not sold on the state's exchange and thus missed opportunities to receive premium or cost-sharing assistance or both. Lower-income enrollees who chose plans not eligible for subsidies had two to three times higher odds of reporting difficulty paying premiums and out-of-pocket expenses during the year, compared to those who chose eligible plans. Regardless of how the structure of the individual market evolves in the coming years, efforts are likely needed to steer lower-income enrollees away from financially suboptimal plan choices. Project HOPE—The People-to-People Health Foundation, Inc.
Azad, Tej D; Kalani, Maziyar; Wolf, Terrill; Kearney, Alisa; Lee, Yohan; Flannery, Lisa; Chen, David; Berroya, Ryan; Eisenberg, Matthew; Park, Jon; Shuer, Lawrence; Kerr, Alison; Ratliff, John K
Demonstrating the value of spine care requires adequate outcomes assessment. Long-term outcomes are best measured as overall improvement in quality of life (QOL) after surgical intervention. Present registries often require parallel data entry, introducing inefficiencies and limiting compliance. The authors detail the methodology of constructing an integrated electronic health record (EHR) system to collect QOL metrics and demonstrate the effect of data collection on routine clinical workflow. A streamlined approach to collecting QOL data can capture patient data without requiring dual data entry and without increasing clinic visit times. Through extensive literature review, a combination of QOL assessments was selected, consisting of the Patient Health Questionnaire-2 and -9, Oswestry Disability Index, Neck Disability Index, and visual analog scale for pain. These metrics were used to provide assessment of QOL following spine surgery and were incorporated into standard clinic workflow by a multidisciplinary team of surgeons, advanced practice providers, and health care information technology specialists. A clinical dashboard tracking more than 25 patient variables was developed. Clinic flow was assessed and opportunities for improvement reviewed. Duration of clinic visits before and after initiation of QOL measure capture was recorded, with assessment of mean clinic visit times for the 12 months before and the 12 months after implementation. The integrated QOL capture was instituted for 3 spine surgeons in a tertiary care academic center. In the 12-month period prior to initiating collection of QOL data, 806 new patient visits were completed with an average visit time of 127.9 ± 51.5 minutes. In the 12 months after implementation, 1013 new patient visits were recorded, with 791 providing QOL measures with an average visit time of 117.0 ± 45.7 minutes. Initially the primary means of collecting patient outcome data was via paper form, with gradual transition to
Dwore, R B; Murray, B P; Parsons, R P; Gustafson, G
To identify the combination of marketing components (i.e., service, price, access, and promotion) of commercial health maintenance organizations (HMOs) that are related to overall enrollee satisfaction. The researchers focus on factors that commercial HMOs control directly--specifically, health care organization and financing. Descriptive (mail order). This study uses national data provided by a major health benefits consulting firm, which collected data from a 1997 calendar year mail survey of HMO administrators. The administrators responded to an extensive survey, which tapped selected HMO marketing-mix components and the percentage of surveyed members who indicated satisfaction with their HMOs. To test hypotheses, researchers treated marketing-mix components as independent variables and enrollee satisfaction as the dependent variable. This study found statistically significant relationships between overall satisfaction and HMO providers' quality; access, particularly to specialists and out-of-network providers; waiting times for physician services; customer service; and disease prevention/health promotion programs. The researchers did not find significant relationships between overall satisfaction and accreditation by the National Committee for Quality Assurance (NCQA), the presence of physician gatekeepers, numbers of providers, or financial indicators. The relationship between overall satisfaction and utilization was mixed. This study's findings are largely consistent with the literature, consumer- and professional-group position papers, and the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry. HMOs can use marketing as a way to address problems and pursue opportunities identified by enrollees. As these findings demonstrate, certain features of HMO design are more appealing to patients. By focusing on these preferences, HMOs can adopt a responsive market orientation that gives rise to more effective marketing mixes
Siesling, S; Louwman, W J; Kwast, A; van den Hurk, C; O'Callaghan, M; Rosso, S; Zanetti, R; Storm, H; Comber, H; Steliarova-Foucher, E; Coebergh, J W
To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the European Research Area. During 2010-12 an extensive survey of cancer registration practices and data use was conducted among 161 population-based CRs across Europe. Responding registries (66%) operated in 33 countries, including 23 with national coverage. Population-based oncological surveillance started during the 1940-50s in the northwest of Europe and from the 1970s to 1990s in other regions. The European Union (EU) protection regulations affected data access, especially in Germany and France, but less in the Netherlands or Belgium. Regular reports were produced by CRs on incidence rates (95%), survival (60%) and stage for selected tumours (80%). Evaluation of cancer control and quality of care remained modest except in a few dedicated CRs. Variables evaluated were support of clinical audits, monitoring adherence to clinical guidelines, improvement of cancer care and evaluation of mass cancer screening. Evaluation of diagnostic imaging tools was only occasional. Most population-based CRs are well equipped for strengthening cancer surveillance across Europe. Data quality and intensity of use depend on the role the cancer registry plays in the politico, oncomedical and public health setting within the country. Standard registration methodology could therefore not be translated to equivalent advances in cancer prevention and mass screening, quality of care, translational research of prognosis and survivorship across Europe. Further European collaboration remains essential to ensure access to data and comparability of the results. Copyright © 2014 Elsevier Ltd. All rights reserved.
Parati, Gianfranco; Avolio, Alberto; Rogoza, Anatoly N; Kotovskaya, Yulia V; Mulè, Giuseppe; Muiesan, Maria Lorenza; Orlova, Iana A; Grigoricheva, Elena A; Cardona Muñoz, Ernesto; Zelveian, Parounak H; Pereira, Telmo; Peixoto Maldonado, João Manuel
Background Hypertension guidelines recommend ambulatory blood pressure (ABP), central aortic pressure (CAP), and pulse wave velocity (PWV) as parameters for estimating blood pressure (BP) control and vascular impairment. Recent advances in technology have enabled devices to combine non-invasive estimation of these parameters over the 24-hour ABP monitoring. However, currently there is limited evidence on the usefulness of such an approach for routine hypertension management. Objective We recently launched an investigator-initiated, international, multicenter, observational, prospective study, the Vascular health Assessment Of The Hypertensive patients (VASOTENS) Registry, aimed at (1) evaluating non-invasive 24-hour ABP and arterial stiffness estimates (through 24-hour pulse wave analysis, PWA) in hypertensive subjects undergoing ambulatory blood pressure monitoring (ABPM) for clinical reasons; (2) assessing the changes in estimates following treatment; (3) weighing the impact of 24-hour PWA on target organ damage and cardiovascular prognosis; (4) assessing the relationship between arterial stiffness, BP absolute mean level and variability, and prognosis; and (5) validating the use of a 24-hour PWA electronic health (e-health) solution for hypertension screening. Methods Approximately 2000 subjects, referred to 20 hypertension clinics for routine diagnostic evaluation and follow-up of hypertension of any severity or stage, will be recruited. Data collection will include ABPM, performed with a device allowing simultaneous non-invasive assessment of 24-hour CAP and arterial stiffness (BPLab), and clinical data (including cardiovascular outcomes). As recommended by current guidelines, each patient will be followed-up with visits occurring at regular intervals (ideally every 6 months, and not less than once a year depending on disease severity). A Web-based telemedicine platform (THOLOMEUS) will be used for data collection. The use of the telemedicine system will allow
Lehtonen, Lasse A
Legislation on the protection of personal data was first enacted in Finland in 1987 (Act 471/1987) and revised in 1999 (Act 523/1999). The Personal Registries Act of 1987 established a special authority, the "data protection ombudsman" to ensure that a citizen's right to privacy would be maintained despite increased usage of computerised registries containing sensitive data. Health care and medical research, however, have been largely outside the scope of effective scrutiny due to special legislation that gives health care authorities the right to gather and register information on the medical history of an individual citizen. In Finland, the National Research and Development Centre for Welfare and Health (STAKES)--which works in close co-operation with the Ministry of Social Affairs and Health--maintains or supervises several centralised registries containing sensitive data. These registries which are based on an exemption (Act 556/1989) from the general data protection legislation, contain in practice a complete database on all Finnish citizens that have used public health care services. Furthrmore, additional personal information is added into these databases. For example, the central registry on abortions contains not only the identification data of a subject who has had an abortion but also information on the reason for abortion and on the methods of contraception she used. It is noteworthy that these registers are not accessible to the physicians who treat the patient whose data is registered, but are used by the governmental authorities only. At the moment it is unclear whether the recent implementation of an EU directive into the Finnish legislation and the constitutional right to privacy in the revised Finnish constitution (effective from March 1, 2000 onwards) will have any impact on the content or usage of these centralised registers.
Cafri, Guy; Banerjee, Samprit; Sedrakyan, Art; Paxton, Liz; Furnes, Ove; Graves, Stephen; Marinac-Dabic, Danica
The motivating example for this paper comes from a distributed health data network, the International Consortium of Orthopaedic Registries (ICOR), which aims to examine risk factors for orthopedic device failure for registries around the world. Unfortunately, regulatory, privacy, and propriety concerns made sharing of raw data impossible, even if…
Heider, Arvela R; Maloney, Nancy A; Satchidanand, Nikhil; Allen, Geoffrey M; Mueller, Raymond; Gangloff, Steven; Singh, Ranjit
Disease registries, as part of electronic health records (EHRs), have shown promise in improving care and outcomes. However, little is known about how best to implement them across communities, especially in communities that are not highly integrated. The Western New York (WNY) primary care community consists largely of independent practices using at least 20 different EHR products. This paper discusses the processes undertaken to develop a communitywide EHR disease registry in WNY, improvements it engendered, barriers overcome, and the lessons learned. HEALTHeLINK, under the Office of the National Coordinator for Health Information Technology Beacon Community Initiative, reached out to 98 primary care practices in the WNY region to establish EHR-based diabetes registries. Working with practices, community partners, and vendors, registry specifications were created. The registry was piloted with practices using one local vendor's EHR product and then rolled out to other practices, including five other EHR products. Using identified and de-identified registry datasets, quality benchmarking within and between practices and population health management were undertaken. From 2011 to 2013, the WNY Beacon Community assisted 98 practices (344 providers) serving over 50,000 adult diabetic patients. A major focus was on EHR registry development across diverse systems, and overcoming the challenges this presented. The Beacon diabetes registry was implemented at 85 of the 98 targeted practices. Of these registries, 65 met the criteria described in a later section for quality benchmarking and population health management purposes. Practices received quarterly benchmark reports summarizing their performance on key diabetes quality metrics and were compared to community practice averages. Practices used their registries for population health management by identifying and targeting patients in need of follow-up or specific diabetes-related care. The creation of the registry
Wright, Kathy D; Pepper, Ginette A; Caserta, Michael; Wong, Bob; Brunker, Cherie P; Morris, Diana L; Burant, Christopher J; Hazelett, Susan; Kropp, Denise; Allen, Kyle R
Dually enrolled Medicare-Medicaid older adults are a vulnerable population. We tested House's Conceptual Framework for Understanding Social Inequalities in Health and Aging in Medicare-Medicaid enrollees by examining the extent to which disparities indicators, which included race, age, gender, neighborhood poverty, education, income, exercise (e.g., walking), and physical activity (e.g., housework) influence physical function and emotional well-being. This secondary analysis included 337 Black (31%) and White (69%) older Medicare-Medicaid enrollees. Using path analysis, we determined that race, neighborhood poverty, education, and income did not influence physical function or emotional well-being. However, physical activity (e.g., housework) was associated with an increased self-report of physical function and emotional well-being of β = .23, p physical function and emotional well-being in this population should take into account health status indicators such as allostatic load, comorbidity, and perceived racism/discrimination.
Full Text Available Abstract Background Emigrants are often a selected sample and in good health, but migration can have deleterious effects on health. Many immigrant groups report poor health and increased use of health services, and it is often claimed that they tend to use emergency primary health care (EPHC services for non-urgent purposes. The aim of the present study was to analyse immigrants’ use of EPHC, and to analyse variations according to country of origin, reason for immigration, and length of stay in Norway. Methods We conducted a registry based study of all immigrants to Norway, and a subsample of immigrants from Poland, Germany, Iraq and Somalia, and compared them with native Norwegians. The material comprised all electronic compensation claims for EPHC in Norway during 2008. We calculated total contact rates, contact rates for selected diagnostic groups and for services given during consultations. Adjustments for a series of socio-demographic and socio-economic variables were done by multiple logistic regression analyses. Results Immigrants as a whole had a lower contact rate than native Norwegians (23.7% versus 27.4%. Total contact rates for Polish and German immigrants (mostly work immigrants were 11.9% and 7.0%, but for Somalis and Iraqis (mostly asylum seekers 31.8% and 33.6%. Half of all contacts for Somalis and Iraqis were for non-specific pain, and they had relatively more of their contacts during night than other groups. Immigrants’ rates of psychiatric diagnoses were low, but increased with length of stay in Norway. Work immigrants suffered less from respiratory and gastrointestinal infections, but had more injuries and higher need for sickness certification. All immigrant groups, except Germans, were more often given a sickness certificate than native Norwegians. Use of interpreter was reduced with increasing length of stay. All immigrant groups had an increased need for long consultations, while laboratory tests were most often used
Behr, Juergen; Hoeper, Marius M; Kreuter, Michael; Klotsche, Jens; Wirtz, Hubert; Pittrow, David
Guidelines on the diagnosis and management of idiopathic pulmonary fibrosis (IPF), a rare manifestation of chronic progressive fibrosing interstitial pneumonia, have been updated by ATS/ERS/JRS/ALAT in 2011. In Europe, data are limited on the characteristics and management of such patients. Investigating significant health trends (INSIGHTS)-IPF is a prospective observational longitudinal registry designed to describe the characteristics and management of newly diagnosed (incident) and prevalent patients with IPF on the long term. The registry uses a non-probability sampling approach to collect data on characteristics, therapeutic interventions, health-related quality of life and health economic parameters. At least 500 patients in ambulatory care will be included consecutively in about 30 centres. The study has been initiated in November 2012, and currently (December 2013) follows 344 patients. ClinTrials.gov identifier is NCT01695408. INSIGHTS-IPF documents one of the largest IPF cohorts in Europe. The registry is expected to provide much-needed data on the characteristics and management situation of patients with IPF in Germany. It will allow comparisons with other countries. Gap analyses based on current guidelines for management of these patients will be possible.
The first Cancer Registries were created in 1975 in France. Their ulterior development and their scientific production have been furthered by the apparition from 1986 under the aegis of the Health Ministry and of the INSERM, of a National Population Registry Committee. Cancer Registries have seriously contributed to a better knowledge of the cancer problem in our country and to describe the french specificities, in particular the importance of the mouth and pharynx cancers. They insure both a monitoring and an alert role; they also contribute to the medical supervision of the Chernobyl accident effects. French registries play a very active role concerning clinical research. They participate to many European studies of health care evaluation. In other respects, many etiological studies have been realized about professional risks of cancer, risks linked with nutritional habits, and on the etiologic role of the Tamoxifen. Finally, certain registries have created DNA banks. If nowadays their role in health planning remains modest, they very actively contribute in evaluating screening actions of breast, cervix and large bowel cancers. They also attracted the attention of Health Authorities on the cervix cancer screening's incoherencies. They evaluate the pilot project of the breast cancer and the registry of the Côte d'Or country evaluates the efficacity of a randomized colo rectal mass screening study. The main difficulties met by the registries are linked with the development of laws protecting more and more the individual freedoms, making it harder and harder the registration exhaustive character.
Stewart, Alexandra M; Lindley, Megan C; Chang, Kristen H M; Cox, Marisa A
Medicaid is the largest funding source of health services for the poorest people in the United States. Medicaid enrollees have greater health care, needs, and higher health risks than other individuals in the country and, experience disproportionately low rates of preventive care. Without, Medicaid coverage, poor uninsured adults may not be vaccinated or would, rely on publicly-funded programs that provide vaccinations. We examined each programs' policies related to benefit coverage and, copayments for adult enrollees. Our study was completed between October 2011 and September 2012 using a document review and a survey of Medicaid administrators that assessed coverage and cost-sharing policy for fee-for-service programs. Results were compared to a similar review, conducted in 2003. Over the past 10 years, Medicaid programs have typically maintained or expanded vaccination coverage benefits for adults and nearly half have explicitly prohibited copayments. The 17 programs that cover all recommended vaccines while prohibiting, copayments demonstrate a commitment to providing increased access to vaccinations for adult enrollees. When developing responses to fiscal and political challenges, the programs that do not cover all ACIP recommended adult vaccines or those that permit copayments for vaccinations, should consider all strategies to increase vaccinations and reduce costs to enrollees.
Atherly, Adam; Mortensen, Karoline
The Patient Protection and Affordable Care Act (ACA) increases Medicaid physician fees for preventive care up to Medicare rates for 2013 and 2014. The purpose of this paper was to model the relationship between Medicaid preventive care payment rates and the use of U.S. Preventive Services Task Force (USPSTF)-recommended preventive care use among Medicaid enrollees. We used data from the 2003 and 2008 Medical Expenditure Panel Survey (MEPS), a national probability sample of the U.S. civilian, noninstitutionalized population, linked to Kaiser state Medicaid benefits data, including the state Medicaid-to-Medicare physician fee ratio in 2003 and 2008. Probit models were used to estimate the probability that eligible individuals received one of five USPSF-recommended preventive services. A difference-in-difference model was used to separate out the effect of changes in the Medicaid payment rate and other factors. Data were linked using state identifiers. Although Medicaid enrollees had a lower rate of use of the five preventive services in univariate analysis, neither Medicaid enrollment nor changes in Medicaid payment rates had statistically significant effects on meeting screening recommendations for the five screenings. The results were robust to a number of different sensitivity tests. Individual and state characteristics were significant. Our results suggest that although temporary changes in primary care provider payments for preventive services for Medicaid enrollees may have other desirable effects, they are unlikely to substantially increase the use of these selected USPSTF-recommended preventive care services among Medicaid enrollees. © Health Research and Educational Trust.
Nilsen, Thomas S; Brandt, Ingunn; Magnus, Per; Harris, Jennifer R
Norway has a long-standing tradition in twin research, but the data collected in several population-based twin studies were not coordinated centrally or easily accessible to the scientific community. In 2009, the Norwegian Twin Registry was established at the Norwegian Institute of Public Health (NIPH) in Oslo with the purpose of creating a single research resource for Norwegian twin data. As of today, the Norwegian Twin Registry contains 47,989 twins covering birth years 1895-1960 and 1967-1979; 31,440 of these twins consented to participate in health-related research. In addition, DNA from approximately 4,800 of the twins is banked at the NIPH biobank and new studies are continually adding new data to the registry. The value of the Norwegian twin data is greatly enhanced by the linkage opportunities offered by Norway's many nationwide registries, spanning a broad array of medical, demographic, and socioeconomic information.
Popovich, Michael; Altstadter, Brandy; Popovich, Lara Hargraves
The Health Information Technology for Economic and Clinical Health (HITECH) Act encourages health information exchange between clinical care and public health through Meaningful Use measures. Meaningful Use specifically identifies objectives to support a number of public health programs including immunizations, cancer registries, syndromic surveillance, and disease case reports. The objective is to improve public and population health. Stage 2 of Meaningful Use focused on compliance to sending of information to public health. The next phase focuses on bi-directional information exchange to support immunization intelligence and to empower providers, pharmacists, and the consumer. The HITECH Act Stage 2 initiative provided incentive and motivation for healthcare providers to encourage their Electronic Medical Record (EMR) vendors to implement data exchanges with public health, with the expected result being timely awareness of health risks. The empowerment nugget in the HITECH Act is not in the compliance reporting to public health. The nugget is the ability for a provider to receive relevant information on the patient or consumer currently in front of them or to those they will connect to through their outreach efforts. The ability for public health to retain current immunization records of individuals from a variety of providers supports their program goals to increase immunization rates and mitigate the risk of vaccine-preventable disease (VPD). The ability for providers to receive at the point of service more complete immunization histories integrated with decision support enhances their delivery of care, thereby reducing the risk of VPD to their patients. Indirectly payers benefit through healthcare cost savings and when the focus is expanded from a health model to a business model, there are significant return on investment (ROI) opportunities that exponentially increase the value of a bi-directional immunization data exchange. This paper will provide
Goudar, Shivaprasad S.; Carlo, Waldemar A.; McClure, Elizabeth M.; Pasha, Omrana; Patel, Archana; Esamai, Fabian; Chomba, Elwyn; Garces, Ana; Althabe, Fernando; Kodkany, Bhalachandra; Sami, Neelofar; Derman, Richard J.; Hibberd, Patricia L.; Liechty, Edward A.; Krebs, Nancy F.; Hambidge, K. Michael; Buekens, Pierre; Moore, Janet; Wallace, Dennis; Jobe, Alan H.; Koso-Thomas, Marion; Wright, Linda L.; Goldenberg, Robert L.
Objective To implement a vital statistics registry system to register pregnant women and document birth outcomes in the Global Network for Women’s and Children’s Health Research sites in Asia, Africa, and Latin America. Methods The Global Network sites began a prospective population-based pregnancy registry to identify all pregnant women and record pregnancy outcomes up to 42 days post-delivery in more than 100 defined low-resource geographic areas (clusters). Pregnant women were registered during pregnancy, with 42-day maternal and neonatal follow-up recorded—including care received during the pregnancy and postpartum periods. Recorded outcomes included stillbirth, neonatal mortality, and maternal mortality rates. Results In 2010, 72 848 pregnant women were enrolled and 6-week follow-up was obtained for 97.8%. Across sites, 40.7%, 24.8%, and 34.5% of births occurred in a hospital, health center, and home setting, respectively. The mean neonatal mortality rate was 23 per 1000 live births, ranging from 8.2 to 48.5 per 1000 live births. The mean stillbirth rate ranged from 13.7 to 54.4 per 1000 births. Conclusion The registry is an ongoing study to assess the impact of interventions and trends regarding pregnancy outcomes and measures of care to inform public health. PMID:22738806
Epping, Jelena; Muschik, Denise; Geyer, Siegfried
Most studies on health disparities deal with the occurrence of disease, but little is known about inequalities in the utilization of mental health services. This paper examines social inequalities in the utilization of outpatient psychotherapy within a health care system where there are low financial barriers to health care and a lack of specific health policies to address access to psychotherapeutic services. Registry data of German statutory health insurance for the year 2013 were used (total population: N = 746,963; 10,711 women and men with psychotherapy). Logistic regression analyses were performed to estimate the effects of three socio-economic (SES) indicators on the utilization of psychotherapy. Utilization of psychotherapy by SES status did not correspond to the social structure of the insured population. Social disparities that disadvantaged less privileged women and men were found; this applied to education, income and occupational position. The most pronounced differences were found for education. In contrast, effects of income were rather small. These findings must be interpreted against the backdrop of the absence of financial barriers to outpatient psychotherapy in Germany. A marked degree of psychotherapy under-utilization was found for lower SES groups. Psychotherapists should pay increased attention to clients with lower socio-economic position. Enhancing mental health literacy, as well as reducing the stigma of mental illness, is crucial for increasing the usage of psychotherapeutic services of those who need it most. Relevant health policy is needed to reduce the barriers to, and consequently increase psychotherapy utilization.
Leininger, Lindsey Jeanne; Friedsam, Donna; Voskuil, Kristen; DeLeire, Thomas
To assess the ability of a short, self-reported health needs assessment (HNA) collected at the time of Medicaid enrollment to predict subsequent utilization and costs. Retrospective cohort study. We analyzed individual-level data that included self-reported HNAs, medical care encounter records, and administrative eligibility records for 34,087 childless adult Medicaid enrollees in Wisconsin, covering the period 2009-2010. High need was operationalized using the following outcome variables measured over the first year of program enrollment: having an inpatient admission; membership in the top decile of emergency department (ED) utilization; and membership in the top cost decile. We assessed the ability of the HNA to predict high-need cases using several complementary methods: the C-statistic; integrated discrimination improvement; and sensitivity, specificity, and positive predictive value resulting from multivariate logistic regression estimates. Using the HNA along with sociodemographic measures met the Hosmer-Lemeshow criterion for adequate predictive performance for the high ED and high cost outcomes (C-statistics of 0.74 and 0.72, respectively). The HNA was associated with large improvements in predictive performance over sociodemographic measures alone for all 3 dependent variables (integrated discrimination improvement of 182%, 413%, and 300% for ED, cost, and inpatient variables, respectively). The HNA also led to considerable improvements in sensitivity and positive predictive value with no resulting decreases in specificity or negative predictive value. Collecting self-reported health measures for a Medicaid expansion population can yield data of sufficient quality for predicting high-need cases.
... after the enrollee dies. If CMS has received premiums for months after the enrollee's death, CMS refunds... made under paragraph (a) of this section, CMS refunds the premiums to the enrollee's survivors in the... security or railroad retirement benefits on the basis of the same earnings record as the...
Full Text Available Lone Baandrup,1 Charlotte Cerqueira,2 Lea Haller,3 Lene Korshøj,3 Inge Voldsgaard,4 Merete Nordentoft5 1Centre for Neuropsychiatric Schizophrenia Research (CNSR and Centre for Clinical Intervention and Neuropsychiatric Schizophrenia Research (CINS, Mental Health Centre Glostrup, Copenhagen University Hospital, Glostrup, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Copenhagen, 3The Danish Clinical Registries, Registry Support Centre for Health Quality and Informatics (KCKS-West, Aarhus, 4Psychosis Ward, Section P, Aarhus University Hospital, Risskov, 5Mental Health Centre Copenhagen, Mental Health Services in the Capital Region of Denmark, University of Copenhagen, Copenhagen, DenmarkAim 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
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
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.
Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels
Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been emp...
Dr. Loria Pollack, a Senior Medical Epidemiologist, talks about the importance of cancer registry data to understanding how cancer affects the United Statesânow and in the future. Created: 5/24/2017 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 5/24/2017.
Duan, Haiping; Ning, Feng; Zhang, Dongfeng;
In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants...... of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes...
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
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.
Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim
Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran's Ministry of Health and Education.
... CERTIFICATION PROVIDER AGREEMENTS AND SUPPLIER APPROVAL Essentials of Provider Agreements § 489.23 Specific limitation on charges for services provided to certain enrollees of fee-for-service FEHB plans. A provider... 42 Public Health 5 2010-10-01 2010-10-01 false Specific limitation on charges for...
Joshi, Shivam; Joshi, Sheela; Kupin, Warren
Kidney transplantation significantly improves patient survival, and is the most cost effective renal replacement option compared with dialysis therapy. Living kidney donors provide a valuable societal gift, but face many formidable disincentive barriers that include not only short- and long-term health risks, but also concerns regarding financial expenditures and health insurance. Other than governmental coverage for their medical evaluation and surgical expenses, donors are often asked to pe...
Wong, Edwin S; Hebert, Paul L; Maciejewski, Matthew L; Perkins, Mark; Bryson, Chris L; Au, David H; Liu, Chuan-Fen
Literature indicates favorable selection among Medicare Advantage (MA) enrollees compared with fee-for-service (FFS) enrollees. This study examined whether favorable selection into MA affected readmission rates among Medicare-eligible veterans following hospitalization for congestive heart failure in the Veterans Affairs Health System (VA). We measured total (VA + Medicare FFS) 30-day all-cause readmission rates across hospitals and all of VA. We used Heckman's correction to adjust readmission rates to be representative of all Medicare-eligible veterans, not just FFS-enrolled veterans. The adjusted all-cause readmission rate among FFS veterans was 27.1% (95% confidence interval [CI] = 26.5% to 27.7%), while the adjusted readmission rate among Medicare-eligible veterans was 25.3% (95% CI = 23.6% to 27.1%) after correcting for favorable selection. Readmission rate estimates among FFS veterans generalize to all Medicare-eligible veterans only after accounting for favorable selection into MA. Estimation of quality metrics should carefully consider sample selection to produce valid policy inferences.
Background There is little current information about the unmet mental health care need (UMHCN) and reasons for it among those exposed to the World Trade Center (WTC) terrorist attacks. The purpose of this study was to assess the level of UMHCN among symptomatic individuals enrolled in the WTC Health Registry (WTCHR) in 2011–2012, and to analyze the relationship between UMHCN due to attitudinal, cost, and access factors and mental health symptom severity, mental health care utilization, health insurance availability, and social support. Methods The WTCHR is a prospective cohort study of individuals with reported exposure to the 2001 WTC attacks. This study used data from 9,803 adults who completed the 2003–2004 (Wave 1) and 2011–2012 (Wave 3) surveys and had posttraumatic stress disorder (PTSD) or depression in 2011–2012. We estimated logistic regression models relating perceived attitudinal, cost and access barriers to symptom severity, health care utilization, a lack of health insurance, and social support after adjusting for sociodemographic characteristics. Results Slightly more than one-third (34.2%) of study participants reported an UMHCN. Symptom severity was a strong predictor of UMHCN due to attitudinal and perceived cost and access reasons. Attitudinal UMHCN was common among those not using mental health services, particularly those with relatively severe mental health symptoms. Cost-related UMHCN was significantly associated with a lack of health insurance but not service usage. Access-related barriers were significantly more common among those who did not use any mental health services. A higher level of social support served as an important buffer against cost and access UMHCN. Conclusions A significant proportion of individuals exposed to the WTC attacks with depression or PTSD 10 years later reported an UMHCN, and individuals with more severe and disabling conditions, those who lacked health insurance, and those with low levels of social
V. K. Ivanov
Full Text Available Summarized radiation-epidemiological data on health effects of the accident at the Chernobyl NPP registered in the follow-up period 1986-2006 on the Russian population are reported. Two groups of population: Chernobyl Emergency accident workers and residents of the most contaminated with radionuclides territories are examined. Impact of radiation-associated risk of solid cancers and leukaemia in these groups is assessed. Prognostic estimates of health effects of the Chernobyl accident on the Russian population are offered in the article.
Jahanfar, Shayesteh; Jaffar, Sharifah Halimah
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.
Full Text Available Individuals with primary immunodeficiency disorder may excrete poliovirus for extended periods and will constitute the only remaining reservoir of virus after eradication and withdrawal of oral poliovirus vaccine. Here, we analyzed the epidemiology of prolonged and chronic immunodeficiency-related vaccine-derived poliovirus cases in a registry maintained by the World Health Organization, to identify risk factors and determine the length of excretion. Between 1962 and 2016, there were 101 cases, with 94/101 (93% prolonged excretors and 7/101 (7% chronic excretors. We documented an increase in incidence in recent decades, with a shift toward middle-income countries, and a predominance of poliovirus type 2 in 73/101 (72% cases. The median length of excretion was 1.3 years (95% confidence interval: 1.0, 1.4 and 90% of individuals stopped excreting after 3.7 years. Common variable immunodeficiency syndrome and residence in high-income countries were risk factors for long-term excretion. The changing epidemiology of cases, manifested by the greater incidence in recent decades and a shift to from high- to middle-income countries, highlights the expanding risk of poliovirus transmission after oral poliovirus vaccine cessation. To better quantify and reduce this risk, more sensitive surveillance and effective antiviral therapies are needed.
Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea
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...
Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...
... News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions Sponsors ... a clinical trial near you Welcome to the Stroke Trials Registry Our registry of clinical trials in ...
..., Organization Determinations and Appeals § 422.620 Notifying enrollees of hospital discharge appeal rights. (a..., acute or non acute, paid through a prospective payment system or other reimbursement basis, limited to... hospitals. (2) For purposes of §§ 422.620 and 422.622, a discharge is a formal release of an enrollee...
Kahende, Jennifer; England, Lucinda; Zhang, Lei; Mowery, Paul; Xu, Xin; Sevilimedu, Varadan; Rolle, Italia
Objective To assess state coverage and utilization of Medicaid smoking cessation medication benefits among fee-for-service enrollees who smoked cigarettes. Methods We used the linked National Health Interview Survey (survey years 1995, 1997–2005) and the Medicaid Analytic eXtract files (1999–2008) to assess utilization of smoking cessation medication benefits among 5,982 cigarette smokers aged 18–64 years enrolled in Medicaid fee-for-service whose state Medicaid insurance covered at least one cessation medication. We excluded visits during pregnancy, and those covered by managed care or under dual enrollment (Medicaid and Medicare). Multivariate logistic regression was used to determine correlates of cessation medication benefit utilization among Medicaid fee-for-service enrollees, including measures of drug coverage (comprehensive cessation medication coverage, number of medications in state benefit, varenicline coverage), individual-level demographics at NHIS interview, age at Medicaid enrollment, and state-level cigarette excise taxes, statewide smoke-free laws, and per-capita tobacco control funding. Results In 1999, the percent of smokers with ≥1 medication claims was 5.7% in the 30 states that covered at least one Food and Drug Administration (FDA)-approved cessation medication; this increased to 9.9% in 2008 in the 44 states that covered at least one FDA-approved medication (p<0.01). Cessation medication utilization was greater among older individuals (≥ 25 years), females, non-Hispanic whites, and those with higher educational attainment. Comprehensive coverage, the number of smoking cessation medications covered and varenicline coverage were all positively associated with utilization; cigarette excise tax and per-capita tobacco control funding were also positively associated with utilization. Conclusions Utilization of medication benefits among fee-for-service Medicaid enrollees increased from 1999–2008 and varied by individual and state
Kahende, Jennifer; Malarcher, Ann; England, Lucinda; Zhang, Lei; Mowery, Paul; Xu, Xin; Sevilimedu, Varadan; Rolle, Italia
To assess state coverage and utilization of Medicaid smoking cessation medication benefits among fee-for-service enrollees who smoked cigarettes. We used the linked National Health Interview Survey (survey years 1995, 1997-2005) and the Medicaid Analytic eXtract files (1999-2008) to assess utilization of smoking cessation medication benefits among 5,982 cigarette smokers aged 18-64 years enrolled in Medicaid fee-for-service whose state Medicaid insurance covered at least one cessation medication. We excluded visits during pregnancy, and those covered by managed care or under dual enrollment (Medicaid and Medicare). Multivariate logistic regression was used to determine correlates of cessation medication benefit utilization among Medicaid fee-for-service enrollees, including measures of drug coverage (comprehensive cessation medication coverage, number of medications in state benefit, varenicline coverage), individual-level demographics at NHIS interview, age at Medicaid enrollment, and state-level cigarette excise taxes, statewide smoke-free laws, and per-capita tobacco control funding. In 1999, the percent of smokers with ≥1 medication claims was 5.7% in the 30 states that covered at least one Food and Drug Administration (FDA)-approved cessation medication; this increased to 9.9% in 2008 in the 44 states that covered at least one FDA-approved medication (putilization was greater among older individuals (≥ 25 years), females, non-Hispanic whites, and those with higher educational attainment. Comprehensive coverage, the number of smoking cessation medications covered and varenicline coverage were all positively associated with utilization; cigarette excise tax and per-capita tobacco control funding were also positively associated with utilization. Utilization of medication benefits among fee-for-service Medicaid enrollees increased from 1999-2008 and varied by individual and state-level characteristics. Given that the Affordable Care Act bars state Medicaid
Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...
Arizpe, Andre; Reveles, Kelly R; Aitken, Samuel L
Antibiotics are among the most widely prescribed medications. The geographic variation in antibiotic prescribing patterns and associated costs among Medicare Part D recipients have not been described. The purpose of this study was to assess the regional variation in antibiotic prescriptions and costs among Medicare Part D enrollees in 2013. Retrospective cohort review of all Medicare Part D enrollees in 2013, using the Medicare Provider Utilization and Payment Data: Part D Prescriber Public Use File. All original or refill prescription claims for antibiotics as listed in the Part D Prescriber Public Use File were included. Our primary outcomes were total antibiotic claims and antibiotic cost per Medicare Part D Enrollee. Data were analyzed descriptively by state and by geographic region as defined by the United States Census Bureau. Antibiotic claims were described overall and by antibiotic class. Over 54 million outpatient antibiotic claims were filed for Part D enrollees in 2013, representing more than $1.5 billion in total antibiotic expenditures. Antibiotic use was highest in the South (1,623 claims/1,000 enrollees), followed by the Midwest (1,401 claims/1,000 enrollees), Northeast (1,366 claims/1,000 enrollees), and West (1,292 claims/1,000 enrollees). Average antibiotic costs per enrollee in each region were as follows: South $46.58, Northeast $43.70, Midwest $40.54, and West $36.42. Fluoroquinolones were the most commonly prescribed class overall (12.2 million claims). Antibiotic use among elderly Medicare enrollees in the United States was highest in the South region. Fluoroquinolones were the most common antibiotics used in all regions. These patterns could be utilized in the development of targeted antimicrobial stewardship efforts.
Fritz, Julie M; Kim, Jaewhan; Thackeray, Anne; Dorius, Josette
Medicaid insures an increasing proportion of adults in the United States. Physical therapy use for low back pain (LBP) in this population has not been described. The study objectives were: (1) to examine physical therapy use by Medicaid enrollees with new LBP consultations and (2) to evaluate associations with future health care use and LBP-related costs. The study was designed as a retrospective evaluation of claims data. A total of 2,289 patients with new LBP consultations were identified during 2012 (mean age=39.3 years [SD=11.9]; 68.2% women). The settings in which the patients entered care and comorbid conditions were identified. Data obtained at 1 year after entry were examined, and physical therapy use was categorized with regard to entry setting, early use (within 14 days of entry), or delayed use (>14 days after entry). The 1-year follow-up period was evaluated for use outcomes (imaging, injection, surgery, and emergency department visit) and LBP-related costs. Variables associated with physical therapy use and cost outcomes were evaluated with multivariate models. Physical therapy was used by 457 patients (20.0%); 75 (3.3%) entered care in physical therapy, 89 (3.9%) received early physical therapy, and 298 (13.0%) received delayed physical therapy. Physical therapy was more common with chronic pain or obesity comorbidities and less likely with substance use disorders. Entering care in the emergency department decreased the likelihood of physical therapy. Entering care in physical medicine increased the likelihood. Relative to primary care entry, physical therapy entry was associated with lower 1-year costs. A single state was studied. No patient-reported outcomes were included. Physical therapy was used often by Medicaid enrollees with LBP. High rates of comorbidities were evident and associated with physical therapy use. Although few patients entered care in physical therapy, this pattern may be useful for managing costs. © 2015 American Physical
Cafri, Guy; Banerjee, Samprit; Sedrakyan, Art; Paxton, Liz; Furnes, Ove; Graves, Stephen; Marinac-Dabic, Danica
The motivating example for this paper comes from a distributed health data network, the International Consortium of Orthopaedic Registries (ICOR), which aims to examine risk factors for orthopedic device failure for registries around the world. Unfortunately, regulatory, privacy, and propriety concerns made sharing of raw data impossible, even if de-identified. Therefore, this article describes an approach to extraction and analysis of aggregate time-to-event data from ICOR. Data extraction is based on obtaining a survival probability and variance estimate for each unique combination of the explanatory variables at each distinct event time for each registry. The extraction procedure allows for a great deal of flexibility; models can be specified after the data have been collected, for example, modeling of interaction effects and selection of subgroups of patients based on their values on the explanatory variables. Our analysis models are adapted from models presented elsewhere--but allowing for censoring in the calculation of the correlation between serial survival probabilities and using the square root of the covariance matrix to transform the data to avoid computational problems in model estimation. Simulations and a real-data example are provided with strengths and limitations of the approach discussed.
Cone James E
Full Text Available Abstract Background Few studies have documented the experiences of individuals who participated in the recovery and cleanup efforts at the World Trade Center Recovery Operation at Fresh Kills Landfill, on debris loading piers, and on transport barges after the September 11, 2001 terrorist attack. Methods Semi-structured telephone interviews were conducted with a purposive sample of workers and volunteers from the World Trade Center Health Registry. Qualitative methods were used to analyze the narratives. Results Twenty workers and volunteers were interviewed. They described the transport of debris to the Landfill via barges, the tasks and responsibilities associated with their post-9/11 work at the Landfill, and their reflections on their post-9/11 experiences. Tasks included sorting through debris, recovering human remains, searching for evidence from the terrorist attacks, and providing food and counseling services. Exposures mentioned included dust, fumes, and odors. Eight years after the World Trade Center disaster, workers expressed frustration about poor risk communication during recovery and cleanup work. Though proud of their contributions in the months after 9/11, some participants were concerned about long-term health outcomes. Conclusions This qualitative study provided unique insight into the experiences, exposures, and concerns of understudied groups of 9/11 recovery and cleanup workers. The findings are being used to inform the development of subsequent World Trade Center Health Registry exposure and health assessments.
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
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.
Brenner, H; Stegmaier, C; Ziegler, H
This paper provides projections of incident cases of malignant neoplasms in Saarland, Germany, between 1988 and 2002. The analyses are based on population forecasts by the National Statistical Office and on age-cohort analyses of cancer incidence data from the population-based cancer registry of the Saarland. Due to dramatic demographic changes and increasing age-specific cancer incidence rates, the average yearly number of total incident cases of malignant neoplasms is projected to increase by 63.1% between 1983-1987 and 1998-2002 in men, with the strongest increase projected for colon cancer (+114.6%). In women, a modest increase (+7.1%) is projected for all malignant neoplasms, with stronger increases for colon cancer (+50.1%), lung cancer (+44%) and breast cancer (+27.4%), whereas decreasing annual numbers of cases are projected for cervical cancer (-51.6%), stomach cancer (-18.5%) and endometrial cancer (-10.2%). The results provide a quantitative basis for health care planning in the Saarland. They may also serve as a rough guide for other parts of Germany for which reliable cancer incidence data are not available.
... Protection and Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA... of interest. FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry... Protection and Quarantine (PPQ) stakeholder registry is an email subscription service that allows...
Stockmann, Chris; Spigarelli, Michael G.; Ampofo, Krow; Sherwin, Catherine MT
Drug development is an expensive process that is marked by a high-failure rate. For this reason early stage bioequivalence and pharmacokinetic studies are essential in determining the fate of new drug products. In this study, we sought to systematically assess the current trends of ongoing and recently completed bioequivalence and bioavailability trials that have been registered within a national clinical trials registry. All bioequivalence and bioavailability studies registered in the United...
Conlin, Ava Marie S; Bukowinski, Anna T; Gumbs, Gia R
The National Smallpox Vaccine in Pregnancy Registry (NSVIPR) actively follows women inadvertently vaccinated with smallpox vaccine during or shortly before pregnancy to evaluate their reproductive health outcomes. Approximately 65% of NSVIPR participants also inadvertently received Anthrax Vaccine Adsorbed (AVA) while pregnant, providing a ready opportunity to evaluate pregnancy and infant health outcomes among these women. AVA-exposed pregnancies were ascertained using NSVIPR and electronic healthcare data. Rates of pregnancy loss and infant health outcomes, including major birth defects, were compared between AVA-exposed and AVA-unexposed pregnancies. Analyses included AVA-exposed and AVA-unexposed pregnant women who also received smallpox vaccine 28 days prior to or during pregnancy. Rates of adverse outcomes among the AVA-exposed group were similar to or lower than expected when compared with published reference rates and the AVA-unexposed population. The findings provide reassurance of the safety of AVA when inadvertently received by a relatively young and healthy population during pregnancy.
U.S. Department of Health & Human Services — By leveraging and developing a set of Minimal Information About Nanomaterials (MIAN), ontology and standards through a community effort, it has developed a data...
Chiu, Maria; Lebenbaum, Michael; Lam, Kelvin; Chong, Nelson; Azimaee, Mahmoud; Iron, Karey; Manuel, Doug; Guttmann, Astrid
Ontario, the most populous province in Canada, has a universal healthcare system that routinely collects health administrative data on its 13 million legal residents that is used for health research. Record linkage has become a vital tool for this research by enriching this data with the Immigration, Refugees and Citizenship Canada Permanent Resident (IRCC-PR) database and the Office of the Registrar General's Vital Statistics-Death (ORG-VSD) registry. Our objectives were to estimate linkage rates and compare characteristics of individuals in the linked versus unlinked files. We used both deterministic and probabilistic linkage methods to link the IRCC-PR database (1985-2012) and ORG-VSD registry (1990-2012) to the Ontario's Registered Persons Database. Linkage rates were estimated and standardized differences were used to assess differences in socio-demographic and other characteristics between the linked and unlinked records. The overall linkage rates for the IRCC-PR database and ORG-VSD registry were 86.4 and 96.2 %, respectively. The majority (68.2 %) of the record linkages in IRCC-PR were achieved after three deterministic passes, 18.2 % were linked probabilistically, and 13.6 % were unlinked. Similarly the majority (79.8 %) of the record linkages in the ORG-VSD were linked using deterministic record linkage, 16.3 % were linked after probabilistic and manual review, and 3.9 % were unlinked. Unlinked and linked files were similar for most characteristics, such as age and marital status for IRCC-PR and sex and most causes of death for ORG-VSD. However, lower linkage rates were observed among people born in East Asia (78 %) in the IRCC-PR database and certain causes of death in the ORG-VSD registry, namely perinatal conditions (61.3 %) and congenital anomalies (81.3 %). The linkages of immigration and vital statistics data to existing population-based healthcare data in Ontario, Canada will enable many novel cross-sectional and longitudinal studies to
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
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; PDiabetes 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.
Husson, O.; Mols, F.; Fransen, M.P.; Poll-Franse, L.V. van de; Ezendam, N.P.
BACKGROUND: The objectives of the study were to examine the prevalence of health literacy (HL) among colorectal cancer (CRC) survivors and the relation between HL and health behaviors and to explore whether or not HL and health behaviors are independently associated with health-related quality of li
Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...
Full Text Available Rare diseases are diseases with a particularly low prevalence. The specificities of rare diseases - limited number of patients and scarcity of relevant knowledge and expertise - single them out as a distinctive domain of very high added value. The international reference for classification of diseases and conditions is the International Classification of Diseases (ICD, coordinated by the World Health Organization (WHO. Patient registries and databases constitute key instruments for the development of clinical research in the field of rare diseases. Rare disease registries include not only diseases that are inherently rare, but also common diseases that are rare in specific populations, especially those defined by demographics. Disease registries create the possibility of assessing the long-term safety and benefit of different treatments, perhaps leading to treatment algorithms that allow more choices for patients and clinicians.
Jacobson, Gretchen A; Neuman, Patricia; Damico, Anthony
With ongoing interest in rising Medicare Advantage enrollment, we examined whether the growth in enrollment between 2006 and 2011 was mainly due to new beneficiaries choosing Medicare Advantage when they first become eligible for Medicare. We also examined the extent to which beneficiaries in traditional Medicare switched to Medicare Advantage, and vice versa. We found that 22 percent of new Medicare beneficiaries elected Medicare Advantage over traditional Medicare in 2011; they accounted for 48 percent of new Medicare Advantage enrollees that year. People ages 65-69 switched from traditional Medicare to Medicare Advantage at higher-than-average rates. Dual eligibles (people eligible for both Medicare and Medicaid) and beneficiaries younger than age sixty-five with disabilities disenrolled from Medicare Advantage at higher-than-average rates. On average, in each year of the study period we found that fewer than 5 percent of traditional Medicare beneficiaries switched to Medicare Advantage, and a similar percentage of Medicare Advantage enrollees switched to traditional Medicare. These results suggest that initial coverage decisions have long-lasting effects. Project HOPE—The People-to-People Health Foundation, Inc.
Shi, Qiuling; Duvic, Madeleine; Osei, Joyce S; Hordinsky, Maria K; Norris, David A; Price, Vera H; Amos, Christopher I; Christiano, Angela M; Mendoza, Tito R
Alopecia areata (AA) is a nonscarring and recurrent disease characterized by hair loss that may significantly affect patient health-related quality of life (HRQoL). Given the lack of reliable and accurate reporting of HRQoL status in patients with AA, we analyzed data from 532 AA patients from the National Alopecia Areata Registry whose registry record included HRQoL assessments using three validated instruments: Skindex-16, brief version of the Fear of Negative Evaluation Scale, and Dermatology Life Quality Index. The mean HRQoL scores were compared with previously reported HRQoL levels from healthy controls and patients with other skin diseases. Two-step cluster analysis of Skindex-16 scales divided patients into two groups: 481 (57%) with good HRQoL and 361 (43%) with poor HRQoL. Multivariate logistic regression modeling revealed a set of risk factors for poor HRQoL: age HRQoL status of AA patients and may guide patient care in the future.
UK Renal Registry 18th Annual Report: Chapter 12 Epidemiology of Reported Infections amongst Patients Receiving Dialysis for Established Renal Failure in England 2013 to 2014: a Joint Report from Public Health England and the UK Renal Registry.
Evans, Rebecca; Caskey, Fergus; Fluck, Richard; Crowley, Lisa; Davies, John; Nsonwu, Olisaeloka; Farrington, Ken
From 1st May 2013 to 30th April 2014 there were 35 episodes of Methicillin resistant Staphylococcus aureus (MRSA) bacteraemia in established renal failure patients on dialysis. This is now fairly stable year-on-year equating to a rate of 0.15 episodes per 100 dialysis patient years, following an initial decline in rates from 4.0 episodes per 100 dialysis patient years in 2005 when reporting began. Methicillin sensitive Staphylococcus aureus (MSSA) bacteraemia rates were slightly higher this year at 2.23 per 100 dialysis patient years (compared with 1.59 episodes per 100 dialysis patient years last year) with 526 episodes of blood stream infection reported. In 2005, the first year this was reported, there were 1,114 MSSA bacteraemias in 54 centres. There were 247 Clostridium difficile infection episodes with a rate of 1.05 per 100 dialysis patient years, slightly higher than last year at 0.55 episodes per 100 dialysis patient years. Escherichia coli infections occurred at a rate of 1.49 per 100 dialysis patient years, very similar to the rate reported last year (1.32 episodes per 100 dialysis patient years). This report has utilised a new methodology to identify cases, linking all established renal failure cases known to the UK Renal Registry (UKRR) with all infections reported to Public Health England and avoids the need for the local microbiology team to flag the patient as a renal patient. This may have increased the reliability of diagnosis at the UKRR level. In each infection for which access data were collected, the presence of a central venous catheter appeared to correlate with increased risk.
Entering medical records into registries of all sorts has always been a part of everyday work of a general/family physician. There is a distinction between public/population registries on the one hand, and internal, local registries on the other hand. Local registries refer to the catchment population of a particular general/family practice. While keeping population-registries has become a routine with a high level of uniformity in collecting, delivering, recording, analyzing and controlling information, there are no recommendations or standards for keeping local registries, although their importance as well as indisputable necessity have been recognized. They are invaluable for providing an insight into the condition and history of a particular disease in a particular area, planning and taking preventive measures and activities, supervising therapy and medical treatment, as well as for statistical analyses and scientific studies. The most important registry in the field of general practice is the one called "List of health care under the supervision of chosen general/family physicians", which can serve as an index for any other individual record or record of diseases by name kept at a particular general/family practice. Although local registries have "evolved" from notebooks into modern informatic databases, the problem of up-to-dateness cannot be solved until the whole health care system has been connected for competent and authorized persons to be able to record changes of data where and when they take place.
U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...
U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...
Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm;
decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008-2011 and included both in-person assessments of 14,000+ twins born 1931......Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last......-1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions....
Bezem, J.; Theunissen, M.; Buitendijk, E.S; Kocken, P.L.
Background The coverage of preventive health assessments for children is pivotal to the system of preventive health screening. A novel method of triage was introduced in the Preventive Youth Health Care (PYHC) system in the Netherlands with an associated shift of tasks of professionals. Doctor’s ass
Full Text Available Betty Tai,1 Lian Hu,2 Udi E Ghitza,1 Steven Sparenborg,1 Paul VanVeldhuisen,2 Robert Lindblad2 1Center for the Clinical Trials Network, National Institute on Drug Abuse, National Institutes of Health, Bethesda, MD, USA; 2The EMMES Corporation, Rockville, MD, USA Abstract: This commentary discusses the need for developing patient registries of substance use disorders (SUD in general medical settings. A patient registry is a tool that documents the natural history of target diseases. Clinicians and researchers use registries to monitor patient comorbidities, care procedures and processes, and treatment effectiveness for the purpose of improving care quality. Enactments of the Affordable Care Act 2010 and the Mental Health Parity and Addiction Equity Act 2008 open opportunities for many substance users to receive treatment services in general medical settings. An increased number of patients with a wide spectrum of SUD will initially receive services with a chronic disease management approach in primary care. The establishment of computer-based SUD patient registries can be assisted by wide adoption of electronic health record systems. The linkage of SUD patient registries with electronic health record systems can facilitate the advancement of SUD treatment research efforts and improve patient care. Keywords: substance use disorders, primary care, registry, electronic health records, chronic care model
Full Text Available Edmund C Lau1, Fionna S Mowat1, Michael A Kelsh1,*, Jason C Legg2, Nicole M Engel-Nitz3, Heather N Watson1, Helen L Collins2, Robert J Nordyke4,5, Joanna L Whyte21Exponent, Menlo Park, CA, USA; 2Amgen, Thousand Oaks, CA, USA; 3i3 Innovus, Eden Prairie, MN, USA; 4PriceSpective LLC, El Segundo, CA, USA; 5Department of Health Services, UCLA School of Public Health, Los Angeles, CA, USA*Now at Amgen, Thousand Oaks, CA, USAAbstract: Electronic medical records (EMRs are used increasingly for research in clinical oncology, epidemiology, and comparative effectiveness research (CER.Objective: To assess the utility of using EMR data in population-based cancer research by comparing a database of EMRs from community oncology clinics against Surveillance Epidemiology and End Results (SEER cancer registry data and two claims databases (Medicare and commercial claims.Study design and setting: Demographic, clinical, and treatment patterns in the EMR, SEER, Medicare, and commercial claims data were compared using six tumor sites: breast, lung/bronchus, head/neck, colorectal, prostate, and non-Hodgkin's lymphoma (NHL. We identified various challenges in data standardization and selection of appropriate statistical procedures. We describe the patient and clinic inclusion criteria, treatment definitions, and consideration of the administrative and clinical purposes of the EMR, registry, and claims data to address these challenges.Results: Sex and 10-year age distributions of patient populations for each tumor site were generally similar across the data sets. We observed several differences in racial composition and treatment patterns, and modest differences in distribution of tumor site.Conclusion: Our experience with an oncology EMR database identified several factors that must be considered when using EMRs for research purposes or generalizing results to the US cancer population. These factors were related primarily to evaluation of treatment patterns, including
Demleitner, Markus; Sidaner, Pierre Le; Plante, Raymond L
In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources -- typically, data and services -- that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention comm...
Demleitner, M.; Greene, G.; Le Sidaner, P.; Plante, R. L.
In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources-typically, data and services-that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention common usage patterns and open issues as appropriate.
U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...
U.S. Department of Health & Human Services — The National Registry of Evidence-based Programs and Practices (NREPP) is a searchable online registry of mental health and substance abuse interventions that have...
Köhler, Michael; Haag, Susanne; Biester, Katharina; Brockhaus, Anne Catharina; McGauran, Natalie; Grouven, Ulrich; Kölsch, Heike; Seay, Ulrike; Hörn, Helmut; Moritz, Gregor; Staeck, Kerstin
Background When a new drug becomes available, patients and doctors require information on its benefits and harms. In 2011, Germany introduced the early benefit assessment of new drugs through the act on the reform of the market for medicinal products (AMNOG). At market entry, the pharmaceutical company responsible must submit a standardised dossier containing all available evidence of the drug’s added benefit over an appropriate comparator treatment. The added benefit is mainly determined using patient relevant outcomes. The “dossier assessment” is generally performed by the Institute for Quality and Efficiency in Health Care (IQWiG) and then published online. It contains all relevant study information, including data from unpublished clinical study reports contained in the dossiers. The dossier assessment refers to the patient population for which the new drug is approved according to the summary of product characteristics. This patient population may comprise either the total populations investigated in the studies submitted to regulatory authorities in the drug approval process, or the specific subpopulations defined in the summary of product characteristics (“approved subpopulations”). Objective To determine the information gain from AMNOG documents compared with non-AMNOG documents for methods and results of studies available at market entry of new drugs. AMNOG documents comprise dossier assessments done by IQWiG and publicly available modules of company dossiers; non-AMNOG documents comprise conventional, publicly available sources—that is, European public assessment reports, journal publications, and registry reports. The analysis focused on the approved patient populations. Design Retrospective analysis. Data sources All dossier assessments conducted by IQWiG between 1 January 2011 and 28 February 2013 in which the dossiers contained suitable studies allowing for a full early benefit assessment. We also considered all European public assessment
Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.
Wamala, Robert; Maswere, Dyson W.; Mwanga, Yeko
This study investigates the role of prior grounding attained in mathematics in predicting the academic achievement of enrollees in Bachelor of Science in Actuarial Science (BSAS). The investigation is based on administrative records of 240 BSAS enrollees at Makerere University, School of Statistics and Planning in the 2007-2009 cohorts. Students'…
Full Text Available The Registry of Myocardial Infarctions (MI Registry is a national registry in Iran that collects and reports the data on myocardial infarctions. Its main advantage is that it covers the whole country and is mandatory for hospitals to register the MI cases in it. Then, the qualified individuals at the provincial and national levels can get intended reports and make appropriate decisions. Such reports, further to the policy makers and managers, can be very valuable for researchers. The registry is a unique and comprehensive source of data that can provide priceless reports which can be used in management, policy making, resource allocation, and for research purposes. The data of MI patients from all around the country are entered into the registry by the hospitals in which the MI patients are admitted. The data include the demographic information (name, gender, date of birth, literacy, nationality, health insurance, city, and province, admission data (date and time of the first signs of the attack, date and time of admission in the hospital emergency department, date and time of admission in cardiac care unit-CCU, name of the doctor, and the number of patient’s medical record, medical history (coronary heart disease, hypertension, diabetes, high cholesterol, number of cigarettes if smoking, history of CABG and/or PCI and its date, clinical condition (the patient’s condition in terms of rhythm and heart block according to the diagnosis of the doctor, interventions (thrombolytic therapy, CABG, PCI, and date and time of each intervention if applied, laboratory results (positive or negative Troponin T and Troponin I, amount of CPKMB, maximum Troponin T and Troponin I, and date and time of each laboratory test, and the discharge information (the patient’s status when discharged from CCU-stable or dead, prescribed drugs, final diagnosis, and date and time of discharge.
Memon, S.; Szigeti, G.; Field, L.
This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.
Gilling, M.; Budtz-Jorgensen, E.; Boonen, S. E.
The Danish Huntington's Disease Registry (DHR) is a nationwide family registry comprising 14 245 individuals from 445 Huntington's disease (HD) families of which the largest family includes 845 individuals in 8 generations. 1136 DNA and/or blood samples and 18 fibroblast cultures are stored...
Full Text Available Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR with a joint collaboration of the Social Security Organization (SSO and academic research departments considering the requirements of the Iran’s Ministry of Health and Education.
... AFFAIRS Agency Information Collection (Ethics Consultation Feedback Tool (ECFT)) New Enrollee Survey.... 2900-New (VA Form 10-0502).'' SUPPLEMENTARY INFORMATION: Title: Ethics Consultation Feedback Tool (ECFT... experience during the Ethics Consultation Service. VA will be used the data to improve the process of...
Nguyen, Nga Tuyet; Vu, Huong Minh; Dao, Sang Dinh; Tran, Hieu Trung; Nguyen, Tu Xuan Cam
The Vietnam National Expanded Program on Immunization (NEPI) has been successfully implementing a nationwide immunization system since 1985. From the start, the program has increased the immunization coverage rate; however, data on immunization coverage in Vietnam are gathered and aggregated from commune health centers in routine, paper-based reports, which have shortcomings. Also, calculations of coverage are inconsistent at subnational levels, which lead to uncertainty about the size of the target population used as the denominator in coverage calculations. The growth of mobile networks in Vietnam provides an opportunity to apply mHealth to improve the immunization program. In 2012, PATH and the Vietnam NEPI developed and piloted a digital immunization registry, ImmReg, to overcome the challenges of the paper system. A final evaluation was conducted in 2015 to assess the impact of ImmReg, including its use of SMS reminders, on improving the immunization program. The study population comprised all children born in Ben Tre province in September and October of 2013, 2014, and 2015, representing pre-intervention, post-intervention, and one year post-intervention, respectively. Data exported from ImmReg were used to compare the immunization rate, dropout rate, and timeliness of vaccination before and after the intervention. Additionally, a rapid survey was conducted to understand the willingness of parents with children due for vaccination to pay for SMS reminder messages on the immunization schedule. Timely administration of oral polio vaccine, Quinvaxem, and measles 1 vaccine significantly increased over time from baseline to post-intervention to one year post-intervention. In particular, the timeliness of vaccination with the third dose of Quinvaxem increased from 53.6% to 65.8% to 77.2%. For measles 1 vaccine, the rate increased from 70.4% to 76.2% to 92.3%. In addition, the dropout rate from Quinvaxem 1 to Quinvaxem 3 declined from 4.2% in 2013 to 0% in 2015, and
Ezendam, N.P.; Nicolaije, K.A.; Boll, D.; Lybeert, M.L.; Mols, F.; Pijnenborg, J.M.A.; Poll-Franse, L.V. van de
OBJECTIVE: Increasing numbers of endometrial cancer survivors place a high burden on the health care system. This study describes the number of visits to the general practitioner, the medical specialist and other care services, compared with the general population, and factors associated with this h
Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.
Bhugwandass, C.S.; Pijnenborg, J.M.A.; Pijlman, B.; Ezendam, N.P.M.
Background There is wide variation in the application of adjuvant chemotherapy in early-stage epithelial ovarian cancer. Our aim was to assess differences in health-related quality of life (hrqol) between patients with early-stage ovarian cancer who did or did not receive chemotherapy as adjuvant treatment. Methods All patients diagnosed with early-stage ovarian cancer between 2000 and 2010 within the population-based Eindhoven Cancer Registry (n = 191) were enrolled in this study. Patients were requested to complete questionnaires, including the cancer-specific (qlq-C30) and ovarian cancer-specific (qlq-OV28) quality of life measures from the European Organisation for Research and Treatment of Cancer. Primary outcome measures were the generic-and cancer-specific domain scores for hrqol in ovarian cancer survivors. Results Of the 107 patients (56%) who returned the questionnaires, 57 (53.3%) had received adjuvant chemotherapy and 50 (46.7%) had been treated with surgery alone. Significant differences in hrqol between those groups were found in the symptom scales for peripheral neuropathy, attitude toward sickness, and financial situation, with worse scores in the chemotherapy group. Conclusions Results of our study show that patients who receive adjuvant chemotherapy have a significantly worse score for 3 aspects of hrqol. Efforts should be made to reduce use of adjuvant chemotherapy in early-stage ovarian cancer. Moreover, preventive strategies to improve long-term quality of life for those who need adjuvant chemotherapy should be explored. PMID:28050144
A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries. Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 11/21/2016.
Regarding registration and publication of clinical trials, there are now three registry organizations in Japan; the University Hospital Medical Information Network (UMIN), the Japan Pharmaceutical Information Center (JAPIC) and the Japan Medical Association - Center for Clinical Trials (JMACCT). In addition, a portal site which supports searching for information on clinical trials in all three registries has been operated by the National Institute of Public Health (NIPH). After we established a cooperative system, we became a WHO Primary Registry on October 16, 2008 and announced this in Japan on the next day. This cooperation system is called the Japan Primary Registries Network (JPRN). In order to show that this type of network works well as a Primary Registry, we are cooperating with global activities of World Health Organization's International Clinical Trial Registry Platform (WHO ICTRP) to promote clinical trials and propose appropriate idea to the world.
U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...
Full Text Available Inge Schjødt,1 Anne Nakano,2,3 Kenneth Egstrup,4 Charlotte Cerqueira5 1Department of Cardiology, 2Department of Clinical Epidemiology, Aarhus University Hospital, 3Registry Support Centre of Clinical Quality and Health Informatics (West, Aarhus, 4Department of Cardiology, Odense University Hospital, Svendborg Hospital, Svendborg, 5Registry Support Centre of Epidemiology and Biostatistics (East, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, Denmark Aim of database: The aim of the Danish Heart Failure Registry (DHFR is to monitor and improve the care of patients with incident heart failure (HF in Denmark. Study population: The DHFR includes inpatients and outpatients ($18 years with incident HF. Reporting to the DHFR is mandatory for the Danish hospital departments treating patients with incident HF. Final decision to register a patient in the DHFR is made by a cardiologist to ensure the validity of the diagnosis. Approximately 42,400 patients with incident HF were registered in the DHFR in July 2015. Main variables and descriptive data: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification, pharmacological therapy (angiotensin converting enzyme/angiotensin II antagonist inhibitors, beta-blockers, and mineralocorticoid receptor antagonist, nonpharmacological therapy (physical training, patient education, 4-week readmission rate, and 1-year mortality. Furthermore, basic patient characteristics and prognostic factors (eg, smoking and alcohol are recorded. At the annual national audit in the DHFR, the indicators and standards for good clinical quality of care for patients with HF are discussed, and recommendations are reported back to clinicians to promote quality improvement initiatives. Furthermore, results and recommendations are communicated
Full Text Available Abstract Background Citizens, patients and their representatives are increasingly insisting on working with health professionals to organize and discuss research protocols. The International Committee of Medical Journal Editors recommended setting up a public clinical trial registry where anyone can find key information about a trial. Around the world, governments have, in fact, now begun to legislate mandatory disclosure of all clinical trials. The aims of the present survey were to assess the availability of clinical trial registries for Italian citizens and to examine the transparency of the data items reported. Methods The availability of open-access clinical trial registries was surveyed on a sample of 182 websites, including research institutes and centers of excellence (IRCCS-teaching hospitals, hospitals and associations. For each registry we downloaded a sample of two trials to assess the correspondence of the data items reported. Results from the Italian and international registries were compared. Results Fifteen percent of the sample had an open-access registry of clinical trials. Comparison of the data items available, in terms of completeness and transparency, from institutional and international registries indicated wide variability. Conclusions Italian citizens, patients and their associations have scant access to local registries of clinical trials, and international registries are generally more informative. On the European level, advocacy and lobby actions are needed among citizens and patients to boost the diffusion of open-access clinical trial registries without language barriers, thereby facilitating participation, access to information, and the coordination of clinical research.
Kibbelaar, R E; Oortgiesen, B E; van der Wal-Oost, A M; Boslooper, K; Coebergh, J W; Veeger, N J G M; Joosten, P; Storm, H; van Roon, E N; Hoogendoorn, M
Randomised clinical trials (RCTs) are considered the basis of evidence-based medicine. It is recognised more and more that application of RCT results in daily practice of clinical decision-making is limited because the RCT world does not correspond with the clinical real world. Recent strategies aiming at substitution of RCT databases by improved population-based registries (PBRs) or by improved electronic health record (EHR) systems to provide significant data for clinical science are discussed. A novel approach exemplified by the HemoBase haemato-oncology project is presented. In this approach, a PBR is combined with an advanced EHR, providing high-quality data for observational studies and support of best practice development. This PBR + EHR approach opens a perspective on randomised registry trials. Copyright © 2017 Elsevier Ltd. All rights reserved.
Jensen, M S; Snerum, T M Ø; Olsen, L H;
In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data.......In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data....
Fenton, Joshua J; Tancredi, Daniel J; Green, Pamela; Franks, Peter; Baldwin, Laura-Mae
To assess whether greater colonoscopy use among white as compared with nonwhite Medicare enrollees since Medicare established coverage for colorectal cancer (CRC) screening has been associated with a widening in white versus nonwhite disparities in up-to-date CRC testing status. Serial cross-sectional analysis of Medicare claims. Surveillance, Epidemiology, and End Results (SEER) regions in nine states, representing 14% of the U.S. population. A 5% random sample of fee-for-service Medicare enrollees aged 70 to 79 within each 6-month period from mid-1995 through 2003. Trends in up-to-date status (having a fecal occult blood test (FOBT) claim in the prior year or a sigmoidoscopy or colonoscopy claim in the prior 5 years) according to race or ethnicity, estimated using repeated-measures logistic regression adjusting for age, sex, rural versus urban residence, income, comorbidity, and SEER region. From mid-1995 through 2003, the adjusted percentage of enrollees that were up-to-date increased by a similar magnitude in whites (from 39.4% to 47.3%), blacks (from 29.0% to 38.1%), Asians and Pacific Islanders (from 33.1% to 41.8%), and Hispanics (from 23.7% to 33.2%). Although white versus nonwhite disparities in up-to-date status via colonoscopy widened, this was counterbalanced by narrowing white versus nonwhite disparities in up-to-date status via FOBT and sigmoidoscopy. White versus nonwhite disparities in up-to-date CRC testing status in Medicare enrollees largely persisted through 2003.
Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E
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
Mosen, David M; Carlson, Matthew J; Morales, Leo S; Hanes, Pamela P
To determine if differences between English- and Spanish-speaking parents in ratings of their children's health care can be explained by need for interpretive services. Using the Consumer Assessment of Health Plans Survey-Child-Survey (CAHPS), reports about provider communication were compared among 3 groups of parents enrolled in a Medicaid managed care health plan: 1) English speakers, 2) Spanish speakers with no self-reported need for interpretive services, and 3) Spanish speakers with self-reported need for interpretive services. Parents were asked to report how well their providers 1) listened carefully to what was being said, 2) explained things in a way that could be understood, 3) respected their comments and concerns, and 4) spent enough time during medical encounters. Multivariate logistic regression was used to compare the ratings of each of the 3 groups while controlling for child's gender, parent's gender, parent's educational attainment, child's health status, and survey year. Spanish-speaking parents in need of interpretive services were less likely to report that providers spent enough time with their children (odds ratio = 0.34, 95% confidence interval = 0.17-0.68) compared to English-speaking parents. There was no statistically significant difference found between Spanish-speaking parents with no need of interpretive services and English-speaking parents. Among Spanish- versus English-speaking parents, differences in ratings of whether providers spent enough time with children during medical encounters appear to be explained, in part, by need for interpretive services. No other differences in ratings of provider communication were found.
Cancer registries have fundamental roles in cancer surveillance, research, and health services planning, monitoring and evaluation. Many are now assuming a broader role by contributing data for health-service management, alongside data inputs from other registries and administrative data sets. These data are being integrated into de-identified databases using privacy-protecting data linkage practices. Structured pathology reporting is increasing registry access to staging and other prognostic descriptors. Registry directions need to vary, depending on local need, barriers and opportunities. Flexibility and adaptability will be essential to optimize registry contributions to cancer control.
Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager
AIM OF DATABASE: The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. STUDY POPULATION: All patients with acute stroke (from 2003) or TIA (from 2013) treated...... at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. MAIN VARIABLES: The registry holds prospectively collected data on key processes...... of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients...
Escarce, J J; Shea, J A; Chen, W
Commercially insured and Medicare patients who are not in health maintenance organizations (HMOs) tend to use different hospitals than HMO patients use. This phenomenon, called market segmentation, raises important questions about how hospitals that treat many HMO patients differ from those that treat few HMO patients, especially with regard to quality of care. This study of patients undergoing coronary artery bypass graft surgery found no evidence that HMOs in southeast Florida systematically channel their patients to high-volume or low-mortality hospitals. These findings are consistent with other evidence that in many areas of the country, incentives for managed care plans to reduce costs may outweigh incentives to improve quality.
Özcan, Cengiz; Juel, Knud; Flensted Lassen, Jens;
AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...
Sarzi-Puttini, Piercarlo; Varisco, Valentina; Ditto, Maria Chiara; Benucci, Maurizio; Atzeni, Fabiola
The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics, efficacy, and safety of all licensed biological drugs. Their findings also help to improve our understanding of the quality of life and working ability of patients receiving biological drugs, and suggest methods for allocating resources. However, there are only a few registries for psoriatic arthritis, and efforts should be made to increase their number to obtain further reliable and useful data.
Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels
and Pincer resection in 93.5% of the cases. Labral refixation or repair was done in 70.3% of the cases. The most common type of acetabular chondral damage was grade II lesions (36.6%). Grade III and IV changes were seen in 36.1% of the cases. The preoperative iHOT12 was 45 (mean) based on all 12 items. EQ-5D....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...
EUROCOURSE lessons learned from and for population-based cancer registries in Europe and their programme owners : Improving performance by research programming for public health and clinical evaluation
Coebergh, J.W.; van den Hurk, C.J.; Rosso, S.; Comber, H.; Storm, H.; Zanetti, R.; Sacchetto, L.; Janssen-Heijnen, Maryska L. G.; Thong, M.S.Y.; Siesling, S.; van den Eijnden-van Raaij, A.J.M.
Population-based cancer registries (CRs) in Europe have played a supportive, sometimes guiding, role in describing geographic variation of cancer epidemics and comparisons of oncological practice and preventive interventions since the 1950s for all types of cancer, separate and simultaneously. This
Full Text Available Lars H Pedersen,1,2 Olav B Petersen,1,2 Mette Nørgaard,3 Charlotte Ekelund,4 Lars Pedersen,3 Ann Tabor,4 Henrik T Sørensen3 1Department of Clinical Medicine, Aarhus University, 2Department of Obstetrics and Gynecology, 3Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 4Department of Fetal Medicine, Rigshospitalet, Copenhagen, Denmark Abstract: A linked population-based database is being created in Denmark for research on drug safety during pregnancy. It combines information from the Danish National Health Service Prescription Database (with information on all prescriptions reimbursed in Denmark since 2004, the Danish Fetal Medicine Database, the Danish National Registry of Patients, and the Medical Birth Registry. The new linked database will provide validated information on malformations diagnosed both prenatally and postnatally. The cohort from 2008 to 2014 will comprise 589,000 pregnancies with information on 424,000 pregnancies resulting in live-born children, ~420,000 pregnancies undergoing prenatal ultrasound scans, 65,000 miscarriages, and 92,000 terminations. It will be updated yearly with information on ~80,000 pregnancies. The cohort will enable identification of drug exposures associated with severe malformations, not only based on malformations diagnosed after birth but also including those having led to termination of pregnancy or miscarriage. Such combined data will provide a unique source of information for research on the safety of medications used during pregnancy. Keywords: malformations, teratology, therapeutic drug monitoring, epidemiological methods, registries
@@ Introduction The mission of the WHO Intemational Clinical Trials Registry Platform is to ensure that a complete view of research is accessible to all those involved in health care decision making.This will improve research transparency and will ultimately strengthen tha validity and value of the scientific evidence base.The registration of all interventional trials is a scientific, ethical and moral responsibility.
... 42 Public Health 5 2010-10-01 2010-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...
Full Text Available Marit Eika Jørgensen,1,2 Jette K Kristensen,3 Gitte Reventlov Husted,1 Charlotte Cerqueira,4 Peter Rossing1,3,5 1Steno Diabetes Center, Gentofte, 2National Institute of Public Health, University of Southern Denmark, Odense, 3Aarhus University, Aarhus, 4Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, 5University of Copenhagen, Copenhagen, Denmark Aim of the database: The aim of the Danish Adult Diabetes Registry (DADR is to provide data from both the primary health care sector (general practice [GP] and the secondary sector (specialized outpatient clinics to assess the quality of treatment given to patients with diabetes. The indicators represent process and outcome indicators selected from the literature. Study population: The total diabetes population in Denmark is estimated to be ~300,000 adult diabetes patients. Approximately 10% have type 1 diabetes, which is managed mainly in the secondary sector, and 90% have type 2 diabetes with the majority (80% being treated in primary health care. In 2014, DADR included data from a total of 70,826 patients. Main variables: The following variables are assessed: date of analysis as well as the outcome for hemoglobin A1c, blood pressure, lipids, urinary albumin–creatinine ratio, smoking status, glucose-, blood pressure-, and lipid-lowering treatment (yes/no, insulin pump treatment (yes/no, and date of last eye and foot examination. Descriptive data: In 2014, the annual report included data regarding over 38,000 patients from outpatient clinics, which is assumed to have included almost all patients in this setting, and >32,000 from GPs, reflecting improved but still limited coverage from this setting. The annual results are published in a compiled report of Danish Diabetes Care, which included DADR, data from the pediatric diabetes database, and the national ophthalmological diabetes database. The annual report is
Lilleker, James B; Vencovsky, Jiri; Wang, Guochun
AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...
Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted
AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...
Duan, Haiping; Ning, Feng; Zhang, Dongfeng; Wang, Shaojie; Zhang, Dong; Tan, Qihua; Tian, Xiaocao; Pang, Zengchang
In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes using twin modeling and genome-wide association analysis. Cross-cultural collaborative studies have been carried out between China, Denmark, Finland, and US cohorts. Ongoing data collection and analysis for the Qingdao Twin Registry will be discussed in this article.
Full Text Available Bente Arboe,1 Pär Josefsson,2 Judit Jørgensen,3 Jacob Haaber,4 Paw Jensen,5 Christian Poulsen,6 Dorthe Rønnov-Jessen,7 Robert S Pedersen,8 Per Pedersen,9 Mikael Frederiksen,10 Michael Pedersen,1 Peter de Nully Brown1 1Department of Hematology, Copenhagen University Hospital, Rigshospitalet, 2Department of Hematology, Copenhagen University Hospital, Herlev Hospital, Copenhagen, 3Department of Hematology, Aarhus University Hospital, Aarhus, 4Department of Hematology, Odense University Hospital, Odense, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Roskilde Hospital, Roskilde, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Holstebro Hospital, Holstebro, 9Department of Hematology, Esbjerg Hospital, Esbjerg, 10Department of Hematology, Haderslev Hospital, Haderslev, Denmark Aim of database: The Danish National Lymphoma Registry (LYFO was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. Study population: The LYFO database was established in 1982 as a seminational database including all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. Main variables: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis, and three process quality indicators (time from diagnosis until the start of treatment, the presence of relevant diagnostic markers, and inclusion rate in clinical protocols. Descriptive data: Approximately 23
Huckfeldt, Peter J; Escarce, José J; Rabideau, Brendan; Karaca-Mandic, Pinar; Sood, Neeraj
Traditional fee-for-service (FFS) Medicare's prospective payment systems for postacute care provide little incentive to coordinate care or control costs. In contrast, Medicare Advantage plans pay for postacute care out of monthly capitated payments and thus have stronger incentives to use it efficiently. We compared the use of postacute care in skilled nursing and inpatient rehabilitation facilities by enrollees in Medicare Advantage and FFS Medicare after hospital discharge for three high-volume conditions: lower extremity joint replacement, stroke, and heart failure. After accounting for differences in patient characteristics at discharge, we found lower intensity of postacute care for Medicare Advantage patients compared to FFS Medicare patients discharged from the same hospital, across all three conditions. Medicare Advantage patients also exhibited better outcomes than their FFS Medicare counterparts, including lower rates of hospital readmission and higher rates of return to the community. These findings suggest that payment reforms such as bundling in FFS Medicare may reduce the intensity of postacute care without adversely affecting patient health.
Teerawattananon, Yot; Tantivess, Sripen; Yamabhai, Inthira; Tritasavit, Nattha; Walker, Damian G; Cohen, Joshua T; Neumann, Peter J
Economic evaluation has been implemented to inform policy in many areas, including coverage decisions, technology pricing, and the development of clinical practice guidelines. However, there are barriers to evidence-based policy in low- and middle-income countries (LMICs) that include limited stakeholder awareness, resources and data availability, as well as the lack of capacity to conduct country-specific economic evaluations. This study aims to survey health policy experts' opinions on barriers to use of cost-effectiveness data in these settings and to obtain their advice on how to make a new cost-per-DALY database being developed by Tufts Medical Center more relevant to LMICs. It also identifies the factors influencing transferability. In-depth interviews were conducted with 32 participants, including policymakers, technical advisors, and researchers in Health Ministries, universities and non-governmental organisations in Bangladesh, India (New Delhi, Tamil Nadu and Karnataka) and Vietnam. The survey revealed that, in all settings, the use of cost-effectiveness information in policy development is lacking, owing to limited knowledge among policymakers and inadequate human resources with health economics expertise in the government sector. Furthermore, researchers in universities do not have close connections with health authorities. In India and Vietnam, the demand for evidence to inform coverage decisions tends to increase as the countries are moving towards universal health coverage. The informants in all countries argue that cost-effectiveness data are useful for decision-makers; however, most of them do not perform data searches by themselves but rely on the information provided by the technical advisor counterparts. Most interviewees were familiar with using evidence from other countries and were also aware of the influences of contextual elements as a limitation of transferability. Finally, strategies to promote the newly developed database include
Kairys, Steven W; Gubernick, Ruth S; Millican, Adrienne; Adams, William G
The NJIPSP was successful in encouraging a group of small urban practices to adopt the use of immunization registry and to transform immunization delivery from a mechanistic well-child service to a visible, monitored process of care. The project represents a unique combination of technology, public-private collaboration, and well-established quality improvement techniques. The change process involved the whole office as a team in adopting new immunization delivery roles and services. The greatest barrier to acceptance of the registry was (and continues to be) the need for manual data entry as the primary source of data collection, rather than electronic data transfer from other systems. The manual entry of data was labor intensive for participating practices and affected data measurement. Despite this barrier, however, the majority of practices substantially improved the quality of their immunization delivery practices in multiple areas. The rapid movement of primary care practices toward some form of electronic record may reduce this barrier and increase the percentage of practices willing to use a community registry. Practices that engaged collectively in the change process gained momentum from the group effort. Equally important was the public health partnership that helped identify and reduce improvement obstacles. Sustainability of practice-based immunization changes will rely, in part, on the registry's ease of use and the continued visibility of public health at the practice level. Active practice level collaboration by public health adds great value to change efforts. We believe that the best possible immunization delivery relies on both technology (registries and the EMR) and effective office systems. Projects like the NJIPSP are models for systems that integrate technology, practice change, and quality improvement, and their success has the potential to foster the spread of this approach to other primary care practices (especially in New Jersey). The
Kroner, Barbara L.; Tolunay, H. Eser; Basson, Craig T.; Pyeritz, Reed E.; Holmes, Kathryn; Maslen, Cheryl L.; Milewicz, Dianna M.; LeMaire, Scott A.; Hendershot, Tabitha; Desvigne-Nickens, Patrice; Devereux, Richard B.; Dietz, Harry C.; Song, Howard; Ringer, Danny; Mitchell, Megan; Weinsaft, Jonathan W.; Ravekes, William; Menashe, Victor; Eagle, Kim A.
Background Genetically triggered thoracic aortic conditions (GenTAC) represent an important problem for patients and their families. Accordingly, the National Heart, Lung and Blood Institute (NHLBI) established the first phase of its national GenTAC Registry in 2006. Enrollment and Diagnoses Between 2007 and 2010, six enrolling centers established the GenTAC I Registry consisting of 2,046 patients [(Marfan syndrome 576 (28.2%); bicuspid aortic valve disease 504 (24.6%), aneurysm or dissection age <50 years 369 (18%), and others.] Biologic samples for DNA analyses (WBC’s or saliva) are available in 97% and stored plasma is available in 60% of enrollees. Results Initial scientific inquiry using the GenTAC Registry has included validation studies of genetic causes for aortic syndromes, potential usefulness of TGFB blood levels in Marfan subjects, and current surgical approaches to ascending aortic conditions. Future Opportunity GenTAC II will allow biannual follow-up of GenTAC I enrollees for up to nine years, enrollment of an additional 1,500 subjects, further integration of imaging findings with clinical and genetic data through utilization of an imaging core lab, important validation of phenotype-genotype correlations through a phenotyping core lab, and integration of a scientific advisory committee to help define the full range and depth of the Registry’s scientific capabilities. The registry resources are available to the external scientific community through an application process accessible at https://gentac.rti.org. PMID:21982653
The JISC Information Environment Service Registry (IESR) contains descriptions of collections of resources available to researchers, learners and teachers in the UK, along with technical service access details. This paper describes the data model and metadata description schema of IESR, and the services IESR provides to disseminate its records. There is a particular focus on the Open Archives Initiative Protocol for Metadata Harvesting (OAI-PMH) interface, including a possible use scenario. I...
Cacoub, Patrice P; Abola, Maria Teresa B; Baumgartner, Iris;
OBJECTIVES: To examine differences in risk factor (RF) management between peripheral artery disease (PAD) and coronary artery (CAD) or cerebrovascular disease (CVD), as well as the impact of RF control on major 1-year cardiovascular (CV) event rates. METHODS: The REACH Registry recruited >68000...... outpatients aged >or=45 years with established atherothrombotic disease or >or=3 RFs for atherothrombosis. The predictors of RF control that were evaluated included: (1) patient demographics, (2) mode of PAD diagnosis, and (3) concomitant CAD and/or CVD. RESULTS: RF control was less frequent in patients...
da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V
The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate
da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.
Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework
UK Renal Registry 17th Annual Report: Chapter 12 Epidemiology of Reported Infections amongst Patients Receiving Dialysis for Established Renal Failure in England in 2012 to 2013: a Joint Report from Public Health England and the UK Renal Registry.
Pitcher, David; Rao, Anirudh; Caskey, Fergus; Davies, John; Crowley, Lisa; Fluck, Richard; Farrington, Ken
Infection remains one of the leading causes of mortality in established renal failure patients receiving renal replacement therapy (RRT). Data were submitted to Public Health England (PHE) by NHS acute Trusts via Health Care Associated Infection Data Capture System (HCAI-DCS) including whether the patients were receiving dialysis. Individual renal units then confirmed the record either directly via the database or after being contacted. Data were collected for the period 1st May 2012 to the 30th April 2013. There were 31 episodes of MRSA bacteraemia, an overall rate of 0.13 per 100 dialysis patient years, representing a further year-on-year fall in MRSA rate. There were a higher number of MSSA episodes, 372 in total,with an overall rate of 1.59 per 100 dialysis patient years. The number of episodes of E. coli and C. difficile were 308 (1.32 per 100 dialysis patient years) and 123 (0.55 per 100 dialysis patient years) respectively. The presence of a central venous catheter was associated with an elevated risk of MRSA and MSSA bacteraemia. We present data relating to infections in renal dialysis patients reported to PHE in one year. The rate of MRSA bacteraemia episodes in England continues to fall. There is a higher rate of MSSA infections.We also report the results of the second year of E. coli and C. difficile data collection. Future cycles will give further ideas of the trend in incidences of these infections. Further work to refine the definitions and data collection is necessary to ensure consistency of reporting across centres.
Bambang Kelana Simpony
Full Text Available Abstract - Permissions setting on a computer is necessary. This is an effort that is not easy to change the system configuration or settings changed by the user. With a network of computers, of course, permissions setting do not need to be done one by one manually. Because in a computer network course there are many collection of computers connected together. Permissions setting so that the system can use the client-server applications that access restrictions can be done effectively. As the implementation of client-server applications can be created using Visual Basic 6.0. This language has been able to access the socket on the Windows operating system, named Winsock API that supports TCP / IP. This protocol is widely used because of the reliability of client-server application programming. The application is divided into two main applications, namely the client and server program name with the name of the Receiver Sender program. Receiver function receives instructions restriction of access rights Sender and send reports to the Sender process execution. While Sender function to send instructions restrictions permissions via the Registry to the Receiver. And after the test, the application can block important features available in the Windows operating system. So it is expected that these applications can help in permissions setting on a computer network. Keywords: Registry, Winsock API, TCP/IP, Socket, Protocol, Networking Abstrak - Pengaturan hak akses di suatu komputer sangat diperlukan. Hal ini merupakan salah satu upaya agar konfigurasi sistem tidak mudah dirubah atau diganti pengaturannya oleh pengguna. Dengan adanya jaringan komputer, tentunya pengaturan hak akses tidak perlu dilakukan satu-satu secara manual. Karena dalam suatu jaringan komputer pastinya terdapat banyak kumpulan komputer yang saling terhubung. Sehingga pengaturan hak akses bisa menggunakan sistem aplikasi client-server agar pembatasan hak akses bisa dilakukan dengan
Pedersen, Lars H; Petersen, Olav B; Nørgaard, Mette; Ekelund, Charlotte; Pedersen, Lars; Tabor, Ann; Sørensen, Henrik T
A linked population-based database is being created in Denmark for research on drug safety during pregnancy. It combines information from the Danish National Health Service Prescription Database (with information on all prescriptions reimbursed in Denmark since 2004), the Danish Fetal Medicine Database, the Danish National Registry of Patients, and the Medical Birth Registry. The new linked database will provide validated information on malformations diagnosed both prenatally and postnatally. The cohort from 2008 to 2014 will comprise 589,000 pregnancies with information on 424,000 pregnancies resulting in live-born children, ∼420,000 pregnancies undergoing prenatal ultrasound scans, 65,000 miscarriages, and 92,000 terminations. It will be updated yearly with information on ∼80,000 pregnancies. The cohort will enable identification of drug exposures associated with severe malformations, not only based on malformations diagnosed after birth but also including those having led to termination of pregnancy or miscarriage. Such combined data will provide a unique source of information for research on the safety of medications used during pregnancy. PMID:27274312
Approaches 18 19 Primary ADL Registry Contributors Contributor Records Entry Date Navy eLearning (US Navy) 2,086 08/05/2008 Joint Knowledge Development...ADL Registry http://adlregistry.adlnet.gov/ Navy eLearning Content Team https://www.netc.navy.mil/ile Joint Knowledge Online http
Early Procedural and Health Status Outcomes After Chronic Total Occlusion Angioplasty: A Report From the OPEN-CTO Registry (Outcomes, Patient Health Status, and Efficiency in Chronic Total Occlusion Hybrid Procedures).
Sapontis, James; Salisbury, Adam C; Yeh, Robert W; Cohen, David J; Hirai, Taishi; Lombardi, William; McCabe, James M; Karmpaliotis, Dimitri; Moses, Jeffrey; Nicholson, William J; Pershad, Ashish; Wyman, R Michael; Spaedy, Anthony; Cook, Stephen; Doshi, Parag; Federici, Robert; Thompson, Craig R; Marso, Steven P; Nugent, Karen; Gosch, Kensey; Spertus, John A; Grantham, J Aaron
This study sought to accurately describe the success rate, risks, and patient-reported benefits of contemporary chronic total occlusion (CTO) percutaneous coronary intervention (PCI). In light of the evolving techniques to successfully revascularize CTO lesions, there remains a compelling need to more accurately quantify the success rates, risks, and benefits of these complex procedures. Using a uniquely comprehensive, core-lab adjudicated, single-arm, multicenter registry of 1,000 consecutive patients undergoing CTO PCI by the hybrid approach, we evaluated the technical success rates, complication rates, and raw and adjusted health status benefits at 1 month among successfully as compared to unsuccessfully treated patients. Technical success was high (86%). In-hospital and 1-month mortality was 0.9% and 1.3%, respectively, and perforations requiring treatment occurred in 48 patients (4.8%). Among those who survived and completed the 1-month interview (n = 947), mean ± SEM Seattle Angina Questionnaire quality of life scores improved from 49.4 ± 0.9 to 75.0 ± 0.7 (p CTO PCI was 10.8 (95% confidence interval: 6.3 to 15.3; p CTO PCI will help to more accurately contextualize the informed consent process for these procedures so that patients with appropriate indications for CTO PCI can more effectively share in the decision to pursue this or other therapeutic options. Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.
Kalimullin, Aydar M.; Dobrotvorskaya, Svetlana G.
The relevance of studying the stated problem is due to the fact that for increasing the efficiency of higher education marketing it is necessary to take into account several factors, namely, factors that impact the choice of a university and an academic program by enrollees, as well as socio-psychological characteristics of the latter, while…
... officer, volunteer, or human resource program enrollee or giving false report to a Forest officer. 261.3... General Prohibitions § 261.3 Interfering with a Forest officer, volunteer, or human resource program..., intimidating, or intentionally interfering with any Forest officer, volunteer, or human resource program...
Arboe, Bente; Josefsson, Pär; Jørgensen, Judit;
AIM OF DATABASE: The Danish National Lymphoma Registry (LYFO) was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. STUDY POPULATION: The LYFO database was established in 1982 as a seminational database including...... all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. MAIN VARIABLES: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each...... patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis...
Yoshida, Kazuki; Radner, Helga; Kavanaugh, Arthur; Sung, Yoon-Kyoung; Bae, Sang-Cheol; Kishimoto, Mitsumasa; Matsui, Kazuo; Okada, Masato; Tohma, Shigeto; Weinblatt, Michael E.; Solomon, Daniel H.
Many biologic disease-modifying antirheumatic drug (DMARD) discontinuation studies have been conducted, but mainly in trial settings which result in limited generalizability. Registry studies can complement the current literature of biologic DMARD discontinuation by providing more generalizable information. However, registries may need to be combined to increase power and provide a more diverse patient population. This increased power could provide us information about risk and benefits of discontinuing biologic DMARD in typical clinical practice. However, use of multiple registries is not without challenges. In this review, we discuss the challenges to combining data across multiple registries, focusing on biologic discontinuation as an example. Challenges include: 1) generalizability of each registry; 2) new versus prevalent users designs; 3) outcome definitions; 4) different health care systems; 5) different follow up intervals; and 6) data harmonization. The first three apply to each registry, and the last three apply to combining multiple registries. This review describes these challenges, corresponding solutions, and potential future opportunities. PMID:24129133
Nesvåg, Ragnar; Jönsson, Erik G; Bakken, Inger Johanne; Knudsen, Gun Peggy; Bjella, Thomas D; Reichborn-Kjennerud, Ted; Melle, Ingrid; Andreassen, Ole A
Utilization of diagnostic information from national patient registries rests on the quality of the registered diagnoses. We aimed to investigate the agreement and consistency of diagnoses of psychotic and bipolar disorders in the Norwegian Patient Registry (NPR) compared to structured interview-based diagnoses given as part of a clinical research project. Diagnostic data from NPR were obtained for the period 01.01.2008-31.12.2013 for all patients who had been included in the Thematically Organized Psychosis (TOP) study between 18.10.2002 and 01.09.2014 with a Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) diagnosis of schizophrenia (n = 537), delusional disorder (n = 48), schizoaffective disorder (n = 118) or bipolar disorder (n = 408). Diagnostic agreement between the primary DSM-IV diagnosis in TOP and the International Classification of Diseases, 10th revision (ICD-10) diagnoses in NPR was evaluated using Cohen's unweighted nominal kappa (κ). Diagnostic consistency was calculated as the proportion of all registered severe mental disorder diagnoses in NPR that were equivalent to the primary diagnosis given in the TOP study. The proportion of patients registered with the equivalent ICD-10 diagnosis as the primary DSM-IV diagnosis given in TOP was 84.2% for the schizophrenia group, 68.8% for the delusional disorder group, 76.3% for the schizoaffective disorder group, and 78.4% for the bipolar disorder group. Diagnostic agreement was good for schizophrenia (κ = 0.74) and bipolar disorder (κ = 0.72), fair for schizoaffective disorder (κ = 0.63), and poor for delusional disorder (κ = 0.39). Among patients with DSM-IV schizophrenia, 4.7% were diagnosed with ICD-10 bipolar disorder, and among patients with DSM-IV bipolar disorder, 2.5% were diagnosed with ICD-10 schizophrenia. Diagnostic consistency was 84.9% for schizophrenia, 59.1% for delusional disorder, 65.9% for schizoaffective disorder, and 91
Pulikottil-Jacob, Ruth; Connock, Martin; Kandala, Ngianga-Bakwin; Mistry, Hema; Grove, Amy; Freeman, Karoline; Costa, Matthew; Sutcliffe, Paul; Clarke, Aileen
Background Total hip replacement for end stage arthritis of the hip is currently the most common elective surgical procedure. In 2007 about 7.5% of UK implants were metal-on-metal joint resurfacing (MoM RS) procedures. Due to poor revision performance and concerns about metal debris, the use of RS had declined by 2012 to about a 1% share of UK hip procedures. This study estimated the lifetime cost-effectiveness of metal-on-metal resurfacing (RS) procedures versus commonly employed total hip replacement (THR) methods. Methodology/Principal Findings We performed a cost-utility analysis using a well-established multi-state semi-Markov model from an NHS and personal and social services perspective. We used individual patient data (IPD) from the National Joint Registry (NJR) for England and Wales on RS and THR surgery for osteoarthritis recorded from April 2003 to December 2012. We used flexible parametric modelling of NJR RS data to guide identification of patient subgroups and RS devices which delivered revision rates within the NICE 5% revision rate benchmark at 10 years. RS procedures overall have an estimated revision rate of 13% at 10 years, compared to hip replacement, or by patients concerned about the likelihood of revision, regardless of patient age or gender. PMID:27802289
Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé
at hand.Here we present a community-driven curation effort, supported by ELIXIR-the European infrastructure for biological information-that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry...... is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners.As of September 2015, the registry includes 1633 resources, with depositions from 91 individual registrations including 40 institutional providers and 51 individuals. With community support...
Kariisa, Mbabazi; Seiber, Eric
Epidemiologic studies have documented a disproportionate burden of chronic diseases in Appalachia, showing the area to be underserved by the health-care system. Nothing is known about how the health status of the Appalachian population compares with other rural or non-rural populations in the same state. We examined the associations among county type, health insurance category, and health outcomes in poorer adult Ohioans. We obtained data from the 2008 Ohio Family Health Survey, a complex landline- and cell phone-based survey of 50,944 noninstitutionalized households. We constructed bivariate analyses examining health status measures across various insurance categories and metropolitan, suburban, rural, and Appalachian counties in Ohio. Medicaid enrollees living in Appalachian and rural counties tended to be in poorer health and have a greater prevalence of smoking than non-Medicaid enrollees. Within rural and Appalachian regions, Medicaid enrollees were more likely than non-Medicaid enrollees to have lower self-rated health (54.8%, 95% confidence interval [CI] 44.1, 65.5 in rural regions and 52.1%, 95% CI 44.7, 59.5 in Appalachian regions). Appalachian and rural Medicaid enrollees were at an increased likelihood of having several chronic diseases compared with non-Medicaid enrollees. Our findings suggest that rural and Ohio Appalachian Medicaid enrollees were more likely to have hypertension, cardiovascular disease, and overall poorer health than non-Medicaid enrollees. These findings have important policy implications for health-care reform, highlighting regional disparities in provider coverage. These underserved regions would need an increase in the provider base to positively impact proposed Medicaid expansion programs.
...-0609'' in any correspondence. FOR FURTHER INFORMATION CONTACT: Denise McLamb, Enterprise Records...-7479, FAX (202) 632-7583 or email firstname.lastname@example.org . Please refer to ``OMB Control No. 2900...: March 8, 2012. By direction of the Secretary. Denise McLamb, Program Analyst, Enterprise Records...
Espíritu, Nora; Hospital Nacional Dos de Mayo. Lima, Perú. Oficina General de Investigación y Transferencia Tecnológica, Instituto Nacional de Salud. Lima, Perú. Médico Pediatra.; Sacieta, Luisa; Instituto para la Salud Reproductiva. Lima, Perú. Médico Pediatra.; Pantoja, Lilian; Hospital Nacional Dos de Mayo. Lima, Perú. Médico Pediatra.
Objectives. Determine the quality and variability of perinatal mortality (PM) records in Lima and Callao. Materials and methods. Key informants were interview to evaluate the processes. The reference for foetal deaths was taken from the obstetric registry and for early neonatal deaths as the neonatal registry. These were compared with records at a diverse range of levels in hospitals, Regional Directorates of Health (DISA) and Civil Registries (CR). The filling quality of death certificat...
Elderly multiple myeloma patients experience less deterioration in health-related quality of life than younger patients compared to a normative population: a study from the population-based PROFILES registry.
van der Poel, M W M; Oerlemans, S; Schouten, H C; van de Poll-Franse, L V
The objectives of this study were to compare health-related quality of life (HRQOL) between multiple myeloma (MM) patients aged ≤65 and >65 years and to compare this with a normative population. Factors associated with HRQOL were identified. The population-based Eindhoven Cancer Registry was used to select MM patients diagnosed from 1999 to 2010. Patients (n = 289) were invited to complete the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and Quality of Life Questionnaire Multiple Myeloma Module 20 (QLQ-MY20), and 212 patients responded (73 %). Data from the normative population (n = 568) were used for comparison. MM patients >65 years scored better on emotional functioning (p 65 years scored worse on social, physical, and role functioning and on global health/QOL, fatigue, pain, and dyspnea (p < 0.01). Younger patients had worse HRQOL compared to the normative population than elderly patients. Patients with comorbidities reported lower QOL. The longer the time since diagnosis, the better the physical functioning. No major differences in HRQOL were found between younger and older MM patients. Compared to that of the normative population, HRQOL in younger patients was worse than that in older patients. The number of comorbidities and time since diagnosis were associated with HRQOL. MM patients reported that a high symptom burden and therapy should, besides prolonging survival, be aimed at improving HRQOL.
Ingles, Jodie; McGaughran, Julie; Vohra, Jitendra; Weintraub, Robert G; Davis, Andrew; Atherton, John; Semsarian, Christopher
A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family members. A Registry Advisory Committee has been established under the NHMRC Guidelines, and includes a representative from each major recruitment centre. This committee approves all decisions relating to the Registry including approval of research studies. A National Genetic Heart Disease Registry will provide a valuable resource to further our knowledge of the clinical and genetic aspects of these diseases. Since most of the current data about the prevalence, natural history and outcomes of genetic heart diseases has emanated from the United States and Europe, characterising these Australian populations will be of significant benefit, allowing for more informed and specific health care planning and resource provision.
Lakshminarayanan, Subitha; Kar, Sitanshu Sekhar; Gupta, Rajeev; Xavier, Denis; Bhaskar Reddy, S Vijaya
Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry.
Full Text Available Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry.
Wees, P.J. van der; Wammes, J.J.G.; Akkermans, R.P.; Koetsenruijter, J.; Westert, G.P.; Kampen, A. van; Hannink, G.J.; Waal Malefijt, M.C. de; Schreurs, B.W.
BACKGROUND: Patient-Reported Outcome (PRO) measurement is a method for measuring perceptions of patients on their health and quality of life. The aim of this paper is to present the results of PRO measurements in total hip and knee replacement as routinely collected during 20 years of surgery in a
Husson, O.; Mols, F.; Ezendam, N.P.; Schep, G.; Poll-Franse, L.V. van de
PURPOSE: The present study aims to examine the longitudinal relation between physical activity (PA) and health-related quality of life (HRQoL) among colorectal cancer (CRC) survivors. METHODS: Individuals diagnosed with CRC between 2000 and 2009 as registered by the Dutch population-based Eindhoven
Hallman, William K.; Kipen, Howard M.; Diefenbach, Michael; Boyd, Kendal; Kang, Han; Leventhal, Howard; Wartenberg, Daniel
Objectives. We identify symptom patterns among veterans who believe they suffer from Gulf War–related illnesses and characterize groups of individuals with similar patterns. Methods. A mail survey was completed by 1161 veterans drawn from the Gulf War Health Registry. Results. An exploratory factor analysis revealed 4 symptom factors. A K-means cluster analysis revealed 2 groups: (1) veterans reporting good health and few moderate/severe symptoms, and (2) veterans reporting fair/poor health and endorsing an average of 37 symptoms, 75% as moderate/severe. Those in Cluster 2 were more likely to report having 1 or more of 24 medical conditions. Conclusions. These findings are consistent with previous investigations of symptom patterns in Gulf War veterans. This multisymptom illness may be more fully characterized by the extent, breadth, and severity of symptoms reported. PMID:12660208
Cost evaluation of cardiovascular magnetic resonance versus coronary angiography for the diagnostic work-up of coronary artery disease: Application of the European Cardiovascular Magnetic Resonance registry data to the German, United Kingdom, Swiss, and United States health care systems
Full Text Available Abstract Background Cardiovascular magnetic resonance (CMR has favorable characteristics for diagnostic evaluation and risk stratification of patients with known or suspected CAD. CMR utilization in CAD detection is growing fast. However, data on its cost-effectiveness are scarce. The goal of this study is to compare the costs of two strategies for detection of significant coronary artery stenoses in patients with suspected coronary artery disease (CAD: 1 Performing CMR first to assess myocardial ischemia and/or infarct scar before referring positive patients (defined as presence of ischemia and/or infarct scar to coronary angiography (CXA versus 2 a hypothetical CXA performed in all patients as a single test to detect CAD. Methods A subgroup of the European CMR pilot registry was used including 2,717 consecutive patients who underwent stress-CMR. From these patients, 21% were positive for CAD (ischemia and/or infarct scar, 73% negative, and 6% uncertain and underwent additional testing. The diagnostic costs were evaluated using invoicing costs of each test performed. Costs analysis was performed from a health care payer perspective in German, United Kingdom, Swiss, and United States health care settings. Results In the public sectors of the German, United Kingdom, and Swiss health care systems, cost savings from the CMR-driven strategy were 50%, 25% and 23%, respectively, versus outpatient CXA. If CXA was carried out as an inpatient procedure, cost savings were 46%, 50% and 48%, respectively. In the United States context, cost savings were 51% when compared with inpatient CXA, but higher for CMR by 8% versus outpatient CXA. Conclusion This analysis suggests that from an economic perspective, the use of CMR should be encouraged as a management option for patients with suspected CAD.
Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...
Oakley, Lisa P; Harvey, S Marie; Yoon, Jangho; Luck, Jeff
Introduction Previous studies indicate that inadequate prenatal care is more common among women covered by Medicaid compared with private insurance. Increasing the proportion of pregnant women who receive early and adequate prenatal care is a Healthy People 2020 goal. We examined the impact of the implementation of Oregon's accountable care organizations, Coordinated Care Organizations (CCOs), for Medicaid enrollees, on prenatal care utilization among Oregon women of reproductive age enrolled in Medicaid. Methods Using Medicaid eligibility data linked to unique birth records for 2011-2013, we used a pre-posttest treatment-control design that compared prenatal care utilization for women on Medicaid before and after CCO implementation to women never enrolled in Medicaid. Additional stratified analyses were conducted to explore differences in the effect of CCO implementation based on rurality, race, and ethnicity. Results After CCO implementation, mothers on Medicaid had a 13% increase in the odds of receiving first trimester care (OR 1.13, CI 1.04, 1.23). Non-Hispanic (OR 1.20, CI 1.09, 1.32), White (OR 1.20, CI 1.08, 1.33) and Asian (OR 2.03, CI 1.26, 3.27) women on Medicaid were more likely to receive initial prenatal care in the first trimester after CCO implementation and only Medicaid women in urban areas were more likely (OR 1.14, CI 1.05, 1.25) to initiate prenatal care in the first trimester. Conclusion Following Oregon's implementation of an innovative Medicaid coordinated care model, we found that women on Medicaid experienced a significant increase in receiving timely prenatal care.
Gregory L Price
Full Text Available PURPOSE: Non-CML myeloproliferative neoplasms (MPN include essential thrombocythemia (ET, polycythemia vera (PV, and myelofibrosis (MF. Reported median overall survival (OS ranges from a few to several years for MF, a decade or more for ET and PV. The study objective was to compare US survival rates of ET, PV, and MF patients with matched non-MPN/non-cancer controls in a nationally representative database. PATIENTS AND METHODS: Data were taken retrospectively from the Survey, Epidemiology, and End Results (SEER-Medicare linked database. Medicare enrollees with a new SEER MPN diagnosis between Jan 1, 2001 and Dec 31, 2007 were eligible. First MPN diagnosis was required at or after Medicare enrollment to allow for continuous follow-up. Non-MPN/non-cancer control groups were selected from Medicare separately for each MPN subtype and demographically matched to cases at a ratio of 5:1. Survival was determined starting from the case diagnosis date using the Kaplan-Meier method. RESULTS: A total of 3,364 MPN patients (n = 1,217 ET; 1,625 PV; 522 MF met the inclusion criteria and were matched to controls. Mean age was 78.4, 76.1, and 77.4 years for ET, PV, and MF, respectively, and percent female was 63, 50, and 41. Median OS was significantly (p<0.05 lower for MPN cases vs. controls (ET: 68 vs. 101 months; PV: 65 vs. 104; MF: 24 vs. 106. CONCLUSIONS: In the US Medicare population, survival in MF patients was worse than that of patients with ET or PV and significantly worse than matched controls. Survival of patients with ET or PV was substantially inferior to matched controls. These findings have implications for the clinical management of MPN patients and underscore the need for effective therapies in all MPN subtypes.
The NCI, Center for Global Health (CGH), the University of California at Irvine, the Middle East Cancer Consortium, and the International Agency for Research on Cancer partnered in support of the training course, held in Ankara, Turkey this past October, on The Uses of Cancer Registry Data in Cancer Control Research.
Full Text Available Dementia is one of the most disabling health conditions for older people. Increasing attention is paid to the preclinical phase such as cognitive frailty and mild cognitive impairment, and to the prevention programs designed to reduce the number of patients in the future. The aims of this brief report are therefore: i to illustrate an action plan currently active in Treviso and that is aimed at secondary prevention in cognitive frailty subjects on the Treviso Dementia (TREDEM Registry; ii to highlight the results achieved by the TREDEM Registry up to now and how these can be used in future research.
Full Text Available Reimar W Thomsen, Henrik Toft Sørensen Department of Clinical Epidemiology, Aarhus University Hospital, DenmarkValidation studies of health care registries are considered boring by some. An epidemiologist recently conducted a validation study based on the Danish National Registry of Patients and received the following unflattering comment from a reviewer: “A good example of a paper of limited scope that probably would only be published electronically where space is unlimited”. We do not subscribe to this point of view. See Original Research article
Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim
PURPOSE: Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed...... for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were...... registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. CONCLUSIONS: The delays found in getting new registries up and running support the need to improve the timeliness of data collection...
The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.
Rasmussen, Jeppe; Jakobsen, John; Brorson, Stig
The Danish Shoulder Arthroplasty Registry (DSR) was established in 2004. Data are reported electronically by the surgeons. Patient-reported outcome is collected 10-14 months postoperatively using the Western Ontario osteoarthritis of the shoulder index (WOOS). 2,137 primary shoulder arthroplastie...
Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon
Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...
Pino Sánchez, F I; Ballesteros Sanz, M A; Cordero Lorenzana, L; Guerrero López, F
Traumatic disease is a major public health concern. Monitoring the quality of services provided is essential for the maintenance and improvement thereof. Assessing and monitoring the quality of care in trauma patient through quality indicators would allow identifying opportunities for improvement whose implementation would improve outcomes in hospital mortality, functional outcomes and quality of life of survivors. Many quality indicators have been used in this condition, although very few ones have a solid level of scientific evidence to recommend their routine use. The information contained in the trauma registries, spread around the world in recent decades, is essential to know the current health care reality, identify opportunities for improvement and contribute to the clinical and epidemiological research. Copyright © 2014 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.
Stein, Bradley D.; Mendelsohn, Joshua; Gordon, Adam J.; Dick, Andrew W.; Burns, Rachel M.; Sorbero, Mark; Shih, Regina A.; Pacula, Rosalie Liccardo
Background Opioid analgesic and benzodiazepine use in individuals with opioid use disorders (OUDs) can increase the risk for medical consequences and relapse. Little is known about rates of use of these medications or prescribing patterns among communities of prescribers. Aims To examine rates of prescribing to Medicaid-enrollees in the calendar year after an OUD diagnosis, and to examine individual, county, and provider community factors associated with such prescribing. Methods We used 2008 Medicaid claims data from 12 states to identify enrollees diagnosed with OUDs, and 2009 claims data to identify rates of prescribing of each drug. We used social network analysis to identify provider communities and multivariate regression analyses to identify patient, county, and provider community level factors associated with prescribing these drugs. We also examined variation in rates of prescribing across provider communities. Results Among Medicaid-enrollees identified with an OUD, 45% filled a prescription for an opioid analgesic, 37% for a benzodiazepine, and 21% for both in the year following their diagnosis. Females, older individuals, individuals with pain syndromes, and individuals residing in counties with higher rates of poverty were more likely to fill prescriptions. Prescribing rates varied substantially across provider communities, with rates in the highest quartile of prescribing communities over 2.5 times the rates in the lowest prescribing communities. Discussion Prescribing opioid analgesics and benzodiazepines to individuals diagnosed with OUDs may increase risk of relapse and overdose. Interventions should be considered that target provider communities with the highest rates of prescribing and individuals at highest risk. PMID:27449904
Given, R S
This paper tests for the existence and magnitude of economies of scale and scope as possible explanations for the recent observed trends in increasing health maintenance organization (HMO) scale (through merger and acquisition) and scope (through greater participation in public enrollee markets) using firm level data from a sample of California HMOs for the time period 1986-1992. The results suggest that economies of scale provide a strong justification for mergers only in the case of relatively small HMOs (i.e. those with fewer than 115,000 enrollees), and economies of scope do not explain the increasing HMO enrollment of public enrollees.
Beebe, Timothy J; Davern, Michael E; McAlpine, Donna D; Call, Kathleen Thiede; Rockwood, Todd H
We sought to evaluate the effect of pairing a mixed-mode mail and telephone methodology with a prepaid US 2.00 dollars cash incentive on response rates in a survey of Medicaid enrollees stratified by race and ethnicity. Sampling was conducted in 2 stages. The first stage consisted of a simple random sample (SRS) of Medicaid enrollees. In the second stage, American Indian, African American, Latino, Hmong, and Somali enrollees were randomly sampled. A total of 8412 enrollees were assigned randomly to receive a mail survey with no incentive or a US 2.00 dollars bill. The response rate within the SRS after the mail portion was 54% in the incentive group and 45% in the nonincentive group. Response rates increased considerably with telephone follow-ups. The incentive SRS response rate increased to 69%, and the nonincentive response rate increased to 64%. Differences between incentive conditions are more pronounced after the first mailing (P effects on response rates and cost across the different racial and ethnic strata, except for Latino enrollees. A mixed-mode mail and telephone methodology is effective for increasing response rates in a Medicaid population overall and within different racial and ethnic groupings. The effectiveness of this strategy can be enhanced, in terms of response rate and cost, by including a US 2.00 dollars prepaid incentive.
Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps
Adekeye, Oluwatoyosi A.; Abara, Winston E.; Xu, Junjun; Lee, Joel M.; Rust, George; Satcher, David
Introduction Approximately 20 million new sexually transmitted infections (STIs) are diagnosed yearly in the United States costing the healthcare system an estimated $16 billion in direct medical expenses. The presence of other STIs increases the risk of HIV transmission. The Centers for Disease Control and Prevention (CDC) has long recommended routine HIV screening for individuals with a diagnosed STI. Unfortunately, HIV screening prevalence among STI diagnosed patients are still sub-optimal in many healthcare settings. Objective To determine the proportion of STI-diagnosed persons in the Medicaid population who are screened for HIV, examine correlates of HIV screening, and to suggest critical intervention points to increase HIV screening in this population. Methods A retrospective database analysis was conducted to examine the prevalence and correlates of HIV screening among participants. Participant eligibility was restricted to Medicaid enrollees in 29 states with a primary STI diagnosis (chlamydia, gonorrhea, and syphilis) or pelvic inflammatory disease claim in 2009. HIV-positive persons were excluded from the study. Frequencies and descriptive statistics were conducted to characterize the sample in general and by STI diagnosis. Univariate and multivariate logistic regression were performed to estimate unadjusted odds ratios and adjusted odds ratio respectively and the 95% confidence intervals. Multivariate logistic regression models that included the independent variables (race, STI diagnosis, and healthcare setting) and covariates (gender, residential status, age, and state) were analyzed to examine independent associations with HIV screening. Results About 43% of all STI-diagnosed study participants were screened for HIV. STI-diagnosed persons that were between 20–24 years, female, residing in a large metropolitan area and with a syphilis diagnosis were more likely to be screened for HIV. Participants who received their STI diagnosis in the emergency
Wendy, L; Radzi, M
Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008.
Davids, M Razeen; Eastwood, John B; Selwood, Neville H; Arogundade, Fatiu A; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A M; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R; Adu, Dwomoa
There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries.
Christopher J. Ryerson
Full Text Available Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1 describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2 determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.
U.S. Department of Health & Human Services — SEER Limited-Use cancer incidence data with associated population data. Geographic areas available are county and SEER registry. The Surveillance, Epidemiology, and...
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF AGRICULTURE Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...
Full Text Available Windows Registry forensics is an important branch of computer and network forensics. Windows Registry is often considered as the heart of Windows Operating Systems because it contains allof the configuration setting of specific users, groups, hardware, software, and networks. Therefore, Windows Registry can be viewed as a gold mine of forensic evidences which could be used in courts. This paper introduces the basics of Windows Registry, describes its structure and its keys and subkeys thathave forensic values. This paper also discusses how the Windows Registry forensic keys can be applied in intrusion detection.
Demleitner, Markus; Taylor, Mark; Normand, Jonathan
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
Registries play a key role in service-oriented applications. Originally, they were neutral players between service providers and clients. The UDDI Business Registry (UBR) was meant to foster these concepts and provide a common reference for companies interested in Web services. The more Web services were used, the more companies started create their own local registries: more efficient discovery processes, better control over the quality of published information, and also more sophisticated publication policies motivated the creation of private repositories. The number and heterogeneity of the different registries - besides the decision to close the UBR are pushing for new and sophisticated means to make different registries cooperate. This paper proposes DIRE (DIstributed REgistry), a novel approach based on a publish and subscribe (P/S) infrastructure to federate different heterogeneous registries and make them exchange information about published services. The paper discusses the main motivations for the P...
Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
Dannenbaum, D.; Verronneau, M.; Torrie, J.; Smeja, H.; Robinson, E; Dumont, C.; Kovitch, I.; Webster, T.
PROBLEM BEING ADDRESSED: Diabetes is rapidly evolving as a major health concern in the Cree population of eastern James Bay (Eeyou Istchee). The Cree Board of Health and Social Services of James Bay (CBHSSJB) diabetes registry was the initial phase in the development of a comprehensive program for diabetes in this region. OBJECTIVE OF PROGRAM: The CBHSSJB diabetes registry was developed to provide a framework to track the prevalence of diabetes and the progression of diabetic complications. T...
Jakobsen, Erik; Rasmussen, Torben Riis
AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...
Eldrup, Nikolaj; Cerqueira, Charlotte; de la Motte, Louise
AIM: The Danish Vascular Registry (DVR), Karbase, is monitoring arterial and advanced vein interventions conducted at all vascular departments in Denmark. The main aim of the DVR is to improve the quality of treatment for patients undergoing vascular surgery in Denmark by using the registry...... for quality assessment and research. STUDY POPULATION: All patients undergoing vascular interventions (surgical and endovascular) at any vascular department in Denmark are registered in the DVR. The DVR was initiated in 1989, and each year, ∼9,000 procedures are added. By January 2016, >180,000 procedures...... are submitted. Variables for medical treatment (antithrombotic and statin treatment), amputation, and survival are extracted from nationwide, administrative registers. CONCLUSION: The DVR reports outcome on key indicators for monitoring the quality at all vascular departments in Denmark for the purpose...
Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper
Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR...... on the dispensed drug. Conclusion: The possibility of linkage with many other nationwide individual-level data sources renders the DNPR a very powerful pharmacoepidemiological tool...
Gatz, Margaret; Harris, Jennifer R; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L; Snieder, Harold; Spiro, Avron; Butler, David A
The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clinical care. The cohort was assembled in the early 1960s with identification of approximately 16,000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI.
Cuervo, L G; Roca, S; Rodríguez, M N; Stein, J; Izquierdo, J; Trujillo, A; Mora, M
The four primary objectives of this descriptive study were to: 1) design a quality-measurement instrument for institutional cancer registries (ICRs), 2) evaluate the existing ICRs in Colombia with the designed instrument, 3) categorize the different registries according to their quality and prioritize efforts that will efficiently promote better registries with the limited resources available, and 4) determine the institution with the greatest likelihood of successfully establishing Colombia's second population-based cancer registry. In 1990 the National Cancer Institute of Colombia developed 13 institution-based cancer registries in different Colombian cities in order to promote the collection of data from a large group of cancer diagnostic and treatment centers. During the first half of 1997, this evaluation reviewed 12 registries; one of the original 13 no longer existed. All of the Colombian institutions (hospitals) that maintain institution-based cancer registries were included in the study. At each institution, a brief survey was administered to the hospital director, the registry coordinator, and the registrar (data manager). Researchers investigated the institutions by looking at six domains that are in standard use internationally. Within each domain, questions were developed and selected through the Delphi method. Each domain and each question were assigned weights through a consensus process. In most cases, two interviewers went to each site to collect the information. The university hospitals in Cali, Pereira, and Medellín had substantially higher scores, reflecting a good level of performance. Four of the 12 institutions had almost no cancer registry work going on. Five of the 12 hospital directors considered that the information provided by the cancer registries influenced their administrative decisions. Three of the registries had patient survival data. Four of the institutions allocated specific resources to operate their cancer registries; in the
Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. 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. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.
Veltkamp, R; Jüttler, E; Pfefferkorn, T; Purrucker, J; Ringleb, P
Study registries offer the opportunity to evaluate the effects of new therapies or to observe the consequences of new treatments in clinical practice. The SITS-MOST registry confirmed the validity of findings from randomized trials on intravenous thrombolysis concerning safety and efficacy in the clinical routine. Current study registries concerning new interventional thrombectomy techniques suggest a high recanalization rate; however, the clinical benefit can only be evaluated in randomized, controlled trials. Similarly, the experiences of the BASICS registry on basilar artery occlusion have led to the initiation of a controlled trial. The benefit of hemicraniectomy in malignant middle cerebral artery infarction has been demonstrated by the pooled analysis of three randomized trials. Numerous relevant aspects are currently documented in the DESTINY-R registry. Finally, the recently started RASUNOA registry examines diagnostic and therapeutic aspects of ischemic and hemorrhagic stroke occurring during therapy with new oral anticoagulants.
Dowd, B; Feldman, R
The data in Tables 1 through 4 show significant differences in the enrollment of higher health-related financial risk individuals and their families among health plans. FFS enrollees are older and exhibit more chronic illness on average. IPAs enroll a greater proportion of females than do PGP or FFS plans. PGPs and IPAs do not differ significantly in the age and chronic illness of their enrollees, but IPAs enroll a significantly greater proportion of females than do PGPs. The age difference between FFS and prepaid plans appears to be greater for long-term enrollees. The same pattern is true of chronic illness, but the results are often not statistically significant. We do not have time-series data, however, and cannot conclude that future comparisons among long-term enrollees will remains as they are now. In any care our data do not support the hypothesis that biased selection is a short-term problem that will be corrected as the population in prepaid plans ages. Our data contain a cross-section of environments for health plans in firms: long- and short-term offerings, long- and short-term enrollees, high and low out-of-pocket premium costs, etc. Our strongest results are the simplest: across all plans and environments there are significant differences in enrollee characteristics. These differences would not be inefficient if all groups paid actuarially fair premiums. However, mandatory offering and community-rating allow prepaid plans to enroll a younger population with less chronic illness and to maintain an information asymmetry that prevents employers and employees from determining--either prior to or following enrollment--the relationship of the prepaid plan's premium to its marginal cost.
Kildemoes, Helle Wallach; Sørensen, Henrik Toft; Hallas, Jesper
Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR......), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information...
Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth
AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory...... in an annual report. All standards for the quality indicators have been met at a national level since 2014. Indicators for treatment status 1 year after diagnosis are under consideration (now prevalent HF). CONCLUSION: The DHFR is a valuable tool for continuous improvement of quality of care in patients...
Logan, Judith R; Lieberman, David A
Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future.
Cooter, Rodney D; Barker, Shane; Carroll, Sean M; Evans, Gregory R D; von Fritschen, Uwe; Hoflehner, Helmut; Le Louarn, Claude; Lumenta, David B; Mathijssen, Irene M J; McNeil, John; Mulgrew, Stephen; Mureau, Marc A M; Perks, Graeme; Rakhorst, Hinne; Randquist, Charles; Topaz, Moris; Verheyden, Charles; de Waal, John
Breast implants are high-risk devices that have been at the epicenter of much debate and controversy. In light of the Poly Implant Prothèse crisis, data registries among 11 national societies around the world are cooperatively calling for the urgent need to establish robust national clinical quality registries based on international best practice within a framework of international collaboration. A survey was conducted on the historic and current status of national breast device registries. Eleven countries participated in the study, illustrating different data collection systems and registries around the world. Data collection was designed to illustrate the capabilities of current national registries, with particular focus on capture rate and outcome reporting mechanisms. A study of national breast implant registries revealed that less than half of the participating countries had operational registries and that none of these had adequately high data capture to enable reliable outcome analysis. The study revealed that the two most common problems that discouraged participation are the complexity of data sets and the opt-in consent model. Recent implant crises have highlighted the need for robust registries. This article argues the importance of securing at least 90 percent data capture, which is achievable through the opt-out consent model. Since adopting this model, the Australian Breast Device Registry has increased data capture from 4 percent to over 97 percent. Simultaneously, it is important to foster international collaboration from the outset to avoid duplication of efforts and enable the development of effective international early warning systems.
Ieva, Francesca; Gale, Chris P; Sharples, Linda D
Clinical registries are established as tools for auditing clinical standards and benchmarking quality improvement initiatives. They also have an emerging role (as electronic health records) in cardiovascular research and, in particular, the conduct of RCTs. While the RCT is accepted as the most robust experimental design, observational data from clinical registries has become increasingly valuable for RCTs. Data from clinical registries may be used to augment results from RCTs, identify patients for recruitment and as an alternative when randomization is not practically possible or ethically desirable. Here the authors appraise the advantages and disadvantages of both methodologies, with the aim of clarifying when their joint use may be successful.
Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P
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.
Pan William KY
registries, particularly if registries offer choice for participation. Few parents of vaccinated (6.8% and exempt children (6.7% were aware of laws authorizing immunization registries. Support for laws authorizing registries and requiring health care providers to report to registries was more common among parents of vaccinated than exempt children. Most parents believed that the government, vaccine companies or insurance companies should pay for registries. Conclusion Parental support for registries was relatively high. Parental support for immunization registries may increase with greater parental awareness of the risks of vaccine preventable diseases and utility of vaccination.
Fuller, Richard L; Hughes, John S; Goldfield, Norbert I
Risk adjustment accounts for differences in population mix by reducing the likelihood of enrollee selection by managed care plans and providing a correction to otherwise biased reporting of provider or plan performance. Functional health status is not routinely included within risk-adjustment methods, but is believed by many to be a significant enhancement to risk adjustment for complex enrollees and patients. In this analysis a standardized measure of functional health was created using 3 different source functional assessment instruments submitted to the Medicare program on condition of payment. The authors use a 5% development sample of Medicare claims from 2006 and 2007, including functional health assessments, and develop a model of functional health classification comprising 9 groups defined by the interaction of self-care, mobility, incontinence, and cognitive impairment. The 9 functional groups were used to augment Clinical Risk Groups, a diagnosis-based patient classification system, and when using a validation set of 100% of Medicare data for 2010 and 2011, this study found the use of the functional health module to improve the fit of observed enrollee cost, measured by the R(2) statistic, by 5% across all Medicare enrollees. The authors observed complex nonlinear interactions across functional health domains when constructing the model and caution that functional health status needs careful handling when used for risk adjustment. The addition of functional health status within existing risk-adjustment models has the potential to improve equitable resource allocation in the financing of care costs for more complex enrollees if handled appropriately. (Population Health Management 2016;19:136-144).
Cowan Anne E
Full Text Available Abstract 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
Natter, Marc D; Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E.; Wallace, Carol A.; Warren, Robert W.; Weber, Griffin M.; Mandl, Kenneth D
Objective Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health...
Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E
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.
van Dongen, Thijs T C F; de Graaf, Johan; Huizinga, Eelco P; Champion, Howard R; Hoencamp, Rigo; Leenen, Luke P H
Structural collection of data from combat injuries is important to improve provided care and the outcome of (combat) casualties. Trauma registries are used in civilian and military health care systems for systematic administration of injury data. However, these registries often use different methods of data management, compromising international comparison of trauma systems. The aim of this review is to aid in reaching international (coalition-wide) consensus for compatible data collection methods with uniform definitions, which is needed for transnational research and subsequent improvement of medical support organizations. In this descriptive review, we analyzed different data sets from trauma systems within the American-European context, and included data variables from civilian and military trauma registries. These data sets were analyzed to identify a core set of variables fundamental to describing the tactical context, epidemiology, injury mechanism, injury severity, key treatment, and outcome. A total of 1,672 unique variables, of which 536 military specific, were identified and divided in 11 elemental categories of medical care (patient info, incident info, injury diagnoses, prehospital care, emergency department, imaging, surgical treatment, intensive care, ward, discharge and outcome) and three military-specific categories (forward medical evacuation, prehospital medical treatment facility, and discharge out of theater). A total of 203 key variables were identified and considered fundamental for effective (military) trauma research. Well-established and reliable trauma registries and databases are fundamental in (military) trauma care. We recommend implementation of a (concurrent) UN/NATO wide registry system with a track and follow-up system to further improve the quality of care and registration of casualties. Further research should focus on real time aids available on the battlefield and direct storage/upload in trauma databases in theater. Ultimately
Wallin, B.L. [Lawrence Berkeley Lab., CA (United States)]|[Chicago Medical School, IL (United States); Houser, A.R. [Lawrence Berkeley Lab., CA (United States); Merrill, D.W.; Selvin, S. [Lawrence Berkeley Lab., CA (United States)]|[California Univ., Berkeley, CA (United States). Dept. of Biomedical and Environmental Health Sciences
In the United States, cancer registries have been compiling data for decades, and state vital statistics offices have been compiling birth and death data for nearly a century. Although this information has been well used for disease surveillance and various studies, it could be better exploited by making it more readily available, reducing the duplication of effort that occurs when researchers at the private, city, county, state, and federal levels work separately on their data collection and disease investigations. This report summarizes the nationwide availability of birth and death records and cancer registry data, with particular emphasis on subcounty geographic detail, such as zip code and census tract. Birth and death data are available at the county level for the entire United States from the National Center for Health Statistics. However, county level data are inadequate for small area studies of potential environmental hazards. Hazards of current interest to the Department of Energy (DOE) include DOE facilities, nuclear power plants, and sources of electromagnetic radiation such as broadcasting towers and power lines.
Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.
... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...
Ferreira Pires, Luis; Oostrum, van Arjen; Wijnhoven, Fons; Wang, J.
A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues, wh
da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth
AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...
Ferreira Pires, Luis; Wang, J.; van Oostrum, Arjen; Wijnhoven, Alphonsus B.J.M.
A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues,
Giampaolo, Adele; Abbonizio, Francesca; Arcieri, Romano; Hassan, Hamisa Jane
In Italy, the surveillance of people with bleeding disorders is based on the National Registry of Congenital Coagulopathies (NRCC) managed by the Italian National Institute of Health (Istituto Superiore di Sanità). The NRCC collects epidemiological and therapeutic data from the 54 Hemophilia Treatment Centers, members of the Italian Association of Hemophilia Centres (AICE). The number of people identified with bleeding disorders has increased over the years, with the number rising from approx. 7000 in 2000 to over 11,000 in 2015. The NRCC includes 4020 patients with hemophilia A and 859 patients with hemophilia B. The prevalence of the rare type 3 vWD is 0.20/100,000 inhabitants. Less common congenital bleeding disorders include the following deficiencies: Factor I (fibrinogen), Factor II (prothrombin), Factor V, Factor VII, Factor X, Factor XI and Factor XIII, which affect 1953 patients. Hepatitis C Virus (HCV) infection affects 1561 patients, more than 200 of whom have two infections (HCV + HIV). Estimated hemophilia-related drug consumption in 2015 was approx. 550 million IU of FVIII for hemophilia A patients and approx. 70 million IU of FIX for hemophilia B patients. The NRCC, with its bleeding disorder data set, is a tool that can provide answers to fundamental questions in public health, monitoring care provision and drug treatment, as well as facilitating clinical and epidemiological research. PMID:28335488
Full Text Available Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry.
da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth;
, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected. DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National......, 3,082 patients have been registered. CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark......AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...
Bes, R.E.; Brabers, A.E.M.; Reitsma-van Rooijen, P.M.; Jong, J.D. de
Background: In the last decades, health care systems in several European countries changed from a supply-oriented system to a demand-oriented system based on managed competition. In The Netherlands managed competition was introduced in 2006. Health insurers are allowed to selectively contract care
Bes, R.E.; Brabers, A.E.M.; Reitsma-van Rooijen, P.M.; Jong, J.D. de
Background: In the last decades, health care systems in several European countries changed from a supply-oriented system to a demand-oriented system based on managed competition. In The Netherlands managed competition was introduced in 2006. Health insurers are allowed to selectively contract care p
The Measuring Your Health study: Leveraging community-based cancer registry recruitment to establish a large, diverse cohort of cancer survivors for analyses of measurement equivalence and validity of the Patient Reported Outcomes Measurement Information System® (PROMIS® short form items
Roxanne E. Jensen
Full Text Available The Measuring Your Health (MY-Health study was designed to fill evidence gaps by validating eight Patient Reported Outcomes Measurement Information System® (PROMIS® domains (Anxiety, Depression, Fatigue, Pain Interference, Physical Function, Sleep Disturbance, Applied Cognitive Function, and Ability to Participate in Social Roles and Activities across multiple race-ethnic and age groups in a diverse cohort of cancer patients. This paper provides detailed information on MY-Health study design, implementation, and participant cohort; it identifies key challenges and benefits of recruiting a diverse community-based cancer cohort. Between 2010 and 2012, we identified eligible patients for the MY-Health study in partnership with four Surveillance, Epidemiology, and End Results (SEER program cancer registries located in California, Louisiana, and New Jersey. The overall response rate for the MY-Health cohort (n = 5,506 was 34 %, with a median response time of 9.5 months after initial cancer diagnosis. The cohort represented meaningful diversity of age (22 % under 49 years of age and race/ethnicity (41 % non-Hispanic White across seven cancers. Challenges included lower response rates by race/ethnic minorities, young, and advanced-stage cancer patients, use of non-final registry information for eligibility identification, and lower use of translated surveys than expected. The MY-Health cohort represents one of the largest efforts to measure the full range of patient-reported symptoms experienced after initial cancer treatment. It provides sufficient diversity in terms of sociodemographics, symptoms, and function to provide a meaningful validation of eight PROMIS measures.
... the enrollment, in accordance with this part, and without regard to age, race, sex, health status, or... the organization on account of the prohibited factors (age, race, sex, health status, or hazardous... plan. (3) Provide health benefits for each enrollee and covered family member wherever they may be. (4...
Full Text Available Nis Andersen,1,2 Jesper Østergaard Hjortdal,1,3 Katja Christina Schielke,4 Toke Bek,3 Jakob Grauslund,5 Caroline Schmidt Laugesen,6 Henrik Lund-Andersen,7 Charlotte Cerqueira,8 Jens Andresen2 1Danish Ophthalmological Society, Copenhagen, 2Organization of Danish Ophthalmologists in Private Practice, Copenhagen, 3Department of Ophthalmology, Aarhus University Hospital, Aarhus, 4Department of Ophthalmology, Aalborg University Hospital, Aalborg, 5Department of Ophthalmology, Odense University Hospital, Odense, 6Department of Ophthalmology, Copenhagen University Hospital Roskilde, Roskilde, 7Department of Ophthalmology, Glostrup Hospital, 8Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Rigshospitalet – Glostrup, University of Copenhagen, Copenhagen, Denmark Aim of database: To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations.Target population: The target population includes all patients diagnosed with diabetes. Denmark (5.5 million inhabitants has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments and in private ophthalmological practice. In 2014–2015, DiaBase included data collected from 77,968 diabetes patients.Main variables: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data with respect to age, sex, best corrected visual acuity, screening frequency, grading of diabetic retinopathy and maculopathy at each visit, progression/regression of diabetic eye disease, and prevalence of blindness were obtained. Data
Felder, Tisha M; Do, D Phuong; Lu, Z Kevin; Lal, Lincy S; Heiney, Sue P; Bennett, Charles L
Several factors contribute to the pervasive Black-White disparity in breast cancer mortality in the U.S., such as tumor biology, access to care, and treatments received including adjuvant hormonal therapy (AHT), which significantly improves survival for hormone receptor-positive breast cancers (HR+). We analyzed South Carolina Central Cancer Registry-Medicaid linked data to determine if, in an equal access health care system, racial differences in the receipt of AHT exist. We evaluated 494 study-eligible, Black (n = 255) and White women (n = 269) who were under 65 years old and diagnosed with stages I-III, HR+ breast cancers between 2004 and 2007. Bivariate and multivariate analyses were conducted to assess receipt of ≥1 AHT prescriptions at any point in time following (ever-use) or within 12 months of (early-use) breast cancer diagnosis. Seventy-two percent of the participants were ever-users (70 % Black, 74 % White) and 68 % were early-users (65 % Black, 71 % White) of AHT. Neither ever-use (adjusted OR (AOR) = 0.75, 95 % CI 0.48-1.17) nor early-use (AOR = 0.70, 95 % CI 0.46-1.06) of AHT differed by race. However, receipt of other breast cancer-specific treatments was independently associated with ever-use and early-use of AHT [ever-use: receipt of surgery (AOR = 2.15, 95 % CI 1.35-3.44); chemotherapy (AOR = 1.97, 95 % CI 1.22-3.20); radiation (AOR = 2.33, 95 % CI 1.50-3.63); early-use: receipt of surgery (AOR = 2.03, 95 % CI 1.30-3.17); chemotherapy (AOR = 1.90, 95 % CI 1.20-3.03); radiation (AOR = 1.73, 95 % CI 1.14-2.63)]. No racial variations in use of AHT among women with HR+ breast cancers insured by Medicaid in South Carolina were identified, but overall rates of AHT use by these women is low. Strategies to improve overall use of AHT should include targeting breast cancer patients who do not receive adjuvant chemotherapy and/or radiation.
Mohammadzadeh, Niloofar; Safdari, Reza; Rahimi, Azin
In the new millennium people are facing serious challenges in health care, especially with increasing non- communicable diseases (NCD). One of the most common NCDs is cancer which is the leading cause of death in developed countries and in developing countries is the second cause of death after heart diseases. Cancer registry can make possible the analysis, comparison and development of national and international cancer strategies and planning. Information technology has a vital role in quality improvement and facility of cancer registries. With the use of IT, in addition to gaining general benefits such as monitoring rates of cancer incidence and identifying planning priorities we can also gain specific advantages such as collecting information for a lifetime, creating tele medical records, possibility of access to information by patient, patient empowerment, and decreasing medical errors. In spite of the powerful role of IT, we confront various challenges such as general problems, like privacy of the patient, and specific problems, including possibility of violating patients rights through misrepresentation, omission of human relationships, and decrease in face to face communication between doctors and patients. By implementing appropriate strategies, such as identifying authentication levels, controlling approaches, coding data, and considering technical and content standards, we can optimize the use of IT. The aim of this paper is to emphasize the need for identifying positive and negative effects of modern IT on cancer registry in general and specific aspects as an approach to cancer care management.
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
Zhu, Yuandong; Gladyshev, Pavel; James, Joshua
The Microsoft Windows registry is an important resource in digital forensic investigations. It contains information about operating system configuration, installed software and user activity. Several researchers have focused on the forensic analysis of the Windows registry, but a robust method for associating past events with registry data values extracted from Windows restore points is not yet available. This paper proposes a novel algorithm for analyzing the most recently used (MRU) keys found in consecutive snapshots of the Windows registry. The algorithm compares two snapshots of the same MRU key and identifies data values within the key that have been updated in the period between the two snapshots. User activities associated with the newly updated data values can be assumed to have occurred during the period between the two snapshots.
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...
U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten;
AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... patients is currently 90%. MAIN VARIABLES AND DESCRIPTIVE DATA: Approximately, 250 AML patients, 25 ALL patients, and 230 MDS patients are registered in the DNLR every year. In January 2015, the registry included detailed patient characteristics, disease characteristics, treatment characteristics...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...
Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...
... Home For Consumers Consumer Updates Registries Help Inform Medication Use in Pregnancy Share Tweet Linkedin Pin it ... or epilepsy, pregnant women must often take prescription medication. Studies show that most women take at least ...
Clemente, C; Orazi, A; Rilke, F
After a review of the incidence data on malignant soft-tissue tumors in Italy (Registro dei Tumori della Regione Lombardia, provincia di Varese), Europe (nine European Cancer Registries considered representative of various geographical areas) and extra-European countries (data of ten World Cancer Registries), the aim and the organization of the Italian Malignant Soft-Tissue Tumor Registry are described. The collection system is based on dedicated forms prepared for the computerization of all data. From 1.1.1985 to 31.3.1987, 207 cases of malignant and potentially malignant soft-tissue tumors entered the Registry, with exclusion of those sarcomas arising in viscera. The distribution, categorized by histologic type, sex and site, and the preliminary results on relapses and metastases are reported.
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina
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.
Broeder, Daan; Schuurman, Ineke; Windhouwer, Menzo; Chair), Nicoletta Calzolari (Conference; Choukri, Khalid; Declerck, Thierry; Loftsson, Hrafn; Maegaard, Bente; Mariani, Joseph; Moreno, Asuncion; Odijk, Jan; Piperidis, Stelios
The ISOcat Data Category Registry has been a joint project of both ISO TC 37 and the European CLARIN infrastructure. In this paper the experiences of using ISOcat in CLARIN are described and evaluated. This evaluation clarifies the requirements of CLARIN with regard to a semantic registry to support its semantic interoperability needs. A simpler model based on concepts instead of data categories and a simpler workflow based on community recommendations will address these needs better and offe...
Broeder, Daan; Schuurman, Ineke; Windhouwer, Menzo
The ISOcat Data Category Registry has been a joint project of both ISO TC 37 and the European CLARIN infrastructure. In this paper the experiences of using ISOcat in CLARIN are described and evaluated. This evaluation clarifies the requirements of CLARIN with regard to a semantic registry to support its semantic interoperability needs. A simpler model based on concepts instead of data cate-gories and a simpler workflow based on community recommendations will address these needs better and off...
Wong, Edwin S; Hebert, Paul L; Nelson, Karin M; Hernandez, Susan E; Sylling, Philip W; Fihn, Stephan D; Liu, Chuan-Fen
Prior research examining the relationship between economic conditions and health service demand has focused primarily on outpatient use. This study examines whether local area unemployment, as an indicator of economic conditions, was associated with use of inpatient care, which is theoretically less subject to discretionary use. Using a random sample of 131,603 patients dually enrolled in the Veterans Affairs (VA) Health System and fee-for-service Medicare, we measured VA, Medicare, and total (VA and Medicare) hospitalizations. Overall, local unemployment was not associated with VA, Medicare, or total hospitalization probability. Among low-income veterans exempt from VA copayments, higher local unemployment was moderately associated with a lower probability of hospitalization through Medicare. For veterans subject to VA copayments, higher local unemployment was moderately associated with a higher likelihood of VA hospitalization. These results suggest inpatient use is less sensitive to the economy, although worse economic conditions slightly affected inpatient demand for select veterans. © The Author(s) 2015.
Yawn, Barbara P; Gazzuola, Lilliana; Wollan, Peter C; Kim, W Ray
To develop a model for community-population- or health system-based registries of all patients with diagnosed hepatitis C, to facilitate clinical care and epidemiologic studies. Geographically defined, population-based cohort study. Registry subjects were identified using January 1, 1990, to December 31, 1999, data from the Rochester Epidemiology Project (REP), which lists all diagnoses for Olmsted County residents recorded by clinicians during visits to Olmsted County medical providers. We supplemented diagnostic data with information from laboratory databases that record all hepatitis C testing in Olmsted County. All diagnoses based on the REP and laboratory databases were confirmed by medical record review. Proposed data elements to be included in a hepatitis C registry were identified and defined, and data collection methodology was tested. A total of 355 subjects (62% male) were identified in the total community population of 130,000. Both the diagnostic summary database (n = 309, 87%) and the laboratory database (n = 46, 133%) were important in the identification of subjects for the registry. Nine additional subjects with diagnostic or laboratory evidence of hepatitis C refused the legislatively mandated (Minnesota statute) medical records research authorization and could not be included in the registry. Most desired data elements were available in the medical records. Both medical visit diagnostic summaries (administrative or billing data) and laboratory databases are required to identify subjects with physician-based diagnoses of hepatitis C. Few patients refused the authorization required for inclusion in a research registry.
Gichoya, Judy Wawira; Kohli, Marc D; Haste, Paul; Abigail, Elizabeth Mills; Johnson, Matthew S
Numerous initiatives are in place to support value based care in radiology including decision support using appropriateness criteria, quality metrics like radiation dose monitoring, and efforts to improve the quality of the radiology report for consumption by referring providers. These initiatives are largely data driven. Organizations can choose to purchase proprietary registry systems, pay for software as a service solution, or deploy/build their own registry systems. Traditionally, registries are created for a single purpose like radiation dosage or specific disease tracking like diabetes registry. This results in a fragmented view of the patient, and increases overhead to maintain such single purpose registry system by requiring an alternative data entry workflow and additional infrastructure to host and maintain multiple registries for different clinical needs. This complexity is magnified in the health care enterprise whereby radiology systems usually are run parallel to other clinical systems due to the different clinical workflow for radiologists. In the new era of value based care where data needs are increasing with demand for a shorter turnaround time to provide data that can be used for information and decision making, there is a critical gap to develop registries that are more adapt to the radiology workflow with minimal overhead on resources for maintenance and setup. We share our experience of developing and implementing an open source registry system for quality improvement and research in our academic institution that is driven by our radiology workflow.
Erekson, Elisabeth A; Iglesia, Cheryl B
Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver.
da Cunha-Bang C
Full Text Available Caspar da Cunha-Bang,1 Christian Hartmann Geisler,2 Lisbeth Enggaard,3 Christian Bjørn Poulsen,4 Peter de Nully Brown,2 Henrik Frederiksen,5 Olav Jonas Bergmann,6 Elisa Jacobsen Pulczynski,7 Robert Schou Pedersen,8 Linda Højberg Nielsen,9 Ilse Christiansen,10 Carsten Utoft Niemann2 1Department of Internal Medicine, Roskilde Hospital, Roskilde, Denmark; 2Department of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark; 3Department of Hematology, Herlev Hospital, Herlev, Denmark; 4Department of Hematology, Roskilde Hospital, Roskilde, Denmark; 5Department of Hematology, Odense University Hospital, Odense, Denmark; 6Department of Hematology, Vejle Hospital, Vejle, Denmark; 7Department of Hematology, Aarhus University Hospital, Aarhus, Denmark; 8Department of Hematology, Holstebro Hospital, Holstebro, Denmark; 9Department of Hematology, Esbjerg Hospital, Esbjerg, Denmark; 10Department of Hematology, Aalborg University Hospital, Aalborg, Denmark Aim: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL in Denmark. Secondarily, to evaluate adherence to national guidelines and to provide source data for research purposes. Study population: All patients diagnosed with CLL in Denmark from 2008 onward are included in the registry. Patients are followed in one of nine hematology centers. All centers participate in the registry and are all obliged to collect data. Main variables: Predefined data are collected at the time of diagnosis, and follow-up at the time of significant events: treatment, progression, transplantation, and death. Parameters included in the International Workshop on Chronic Lymphocytic Leukaemia criteria for diagnosis, and for decision on treatment initiation as well as characteristics included in the CLL
Von Korff, Michael; Oliver, Malia; Fishman, Paul; Burbank, John
Effects of increased cost-sharing in Washington State's Basic Health Plan (BHP) were assessed among adult BHP beneficiaries (N=14,515) and age-sex-residence matched controls enrolled in Group Health Cooperative. The BHP enrollees had higher disenrollment than controls before and after cost-sharing increases, but disenrollment did not change with increased cost-sharing. Basic Health Plan enrollees' out-of-pocket-costs increased 100% in two years, compared with 42% for controls. Out-of-pocket costs for BHP enrollees with diabetes increased 61% (from $675 to $1,086), while the 90th percentile increased 74%, from $1,358 to $2,365. Basic Health Plan enrollees had somewhat fewer visits than controls after cost-sharing increases, but total costs, timeliness of glucose monitoring, and glycemic control were unaffected. Cost-sharing changes increased out-of-pocket costs for BHP enrollees without affecting total costs, disenrollment, or diabetes quality of care indicators. The predominant effect of increased cost-sharing was to increase costs for low-income workers, particularly those with chronic disease.
Ahmed A. Zeeneldin
Full Text Available Registering clinical trials (CTs in public domains enhances transparency, increases trust in research, improves participation and safeguards against publication bias. This work was done to study the profile of clinical research in Egypt in three CT registries with different scopes: the WHO International CT Registry Platform (ICTRP, the continental Pan-African CT Registry (PACTR and the US clinicaltrials.gov (CTGR. In March 2014, ICTRP, PACTR and CTGR were searched for clinical studies conducted in Egypt. It was found that the number of studies conducted in Egypt (percentage was 686 (0.30% in ICTRP, 56 (11.3% in PACTR and 548 (0.34% in CTGR. Most studies were performed in universities and sponsored by university/organization, industry or individual researchers. Inclusion of adults from both genders predominated. The median number of participants per study in the three registries ranged between 63 and 155. The conditions researched differed among the three registries and study purpose was mostly treatment followed by prevention. Endpoints were mostly efficacy followed by safety. Observational:Interventional studies (i.e. clinical trials represented 15.5%:84.5% in ICTRP, 0%:100% in PACTR and 16.4%:83.6% in CTGR. Most interventions were drugs or procedures. Observational studies were mostly prospective and cohort studies. Most CTs were phase 3 and tested drugs or procedures. Parallel group assignment and random allocation predominated. Blinding was implemented in many of trials and was mostly double-blind. We conclude that CTs from Egypt in trial registries are apparently low and do not accurately reflect clinical research conducted in Egypt or its potential. Development of an Egyptian CT registry is eagerly needed. Registering all Egyptian CTs in public domains is highly recommended.
Anazawa, Takayuki; Miyata, Hiroaki; Gotoh, Mitsukazu
The cancer registry is an essential part of any rational program of evidence-based cancer control. The cancer control program is required to strategize in a systematic and impartial manner and efficiently utilize limited resources. In Japan, the National Clinical Database (NCD) was launched in 2010. It is a nationwide prospective registry linked to various types of board certification systems regarding surgery. The NCD is a nationally validated database using web-based data collection software; it is risk adjusted and outcome based to improve the quality of surgical care. The NCD generalizes site-specific cancer registries by taking advantage of their excellent organizing ability. Some site-specific cancer registries, including pancreatic, breast, and liver cancer registries have already been combined with the NCD. Cooperation between the NCD and site-specific cancer registries can establish a valuable platform to develop a cancer care plan in Japan. Furthermore, the prognosis information of cancer patients arranged using population-based and hospital-based cancer registries can help in efficient data accumulation on the NCD. International collaboration between Japan and the USA has recently started and is expected to provide global benchmarking and to allow a valuable comparison of cancer treatment practices between countries using nationwide cancer registries in the future. Clinical research and evidence-based policy recommendation based on accurate data from the nationwide database may positively impact the public.
Uldall, P; Michelsen, Susan Ishøy; Topp, M
Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...
Uldall, P; Michelsen, S I; Topp, M;
Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...
mental /behavioral health , and prescriptions. TRICARE Prime enrollees are guaranteed access within time limits. Drive time to the primary care site...efficiency: concept, measurement techniques and review of hospital efficiency studies. Malaysian Journal of Public Health Medicine, 10(2), 35-43...for Resource Allocation Decision Making in the Military Health System Bastian, Nathaniel D. Center for Integrated Healthcare Delivery Systems
Full Text Available Turkish Society of Nephrology registry collects data on hemodialysis, peritoneal dialysis and transplantation on annual basis. Registry reports are printed every year as a booklet and this is the 20th year of registry reports. The registry is in close collaboration with international registries. In this paper data from the 2009 registry report are summarized, additionally yearly trends in the management of end stage renal disease are also provided The number of patients on renal replacement therapy is rapidly increasing, at the end of 2009, 59443 patients were on renal replacement therapy. The prevalence and incidence of end stage renal disease was 819 and 197 per million population respectively. Diabetes was the most important cause of end stage renal disease. Hemodialysis (78.5% was the most common type of treatment modality, followed by transplantation (12.4% and peritoneal dialysis (9.1% End stage renal disease is a very important and growing health problem for our country. Renal registry is a leading tool for providing current and sound data on this public health problem.
Full Text Available Objectives: to evaluate registry data routinely collected by the Chronic Disease Electronic Management System (CDEMS in the monitoring of type 2 diabetes mellitus (T2DM in the Eastern half of the island and use the data to describe the spatial epidemiological patterns of T2DM. Design and Method: The starting point was access and retrival of all exsisting data on the diabetes registry. This data was subsequently validated using handwritten medical records. Several clinical indicators were selected to evaluate the registry. The address of each patient was extracted and georeferenced using ArcGIS 10.0 and several maps were created. Results: The registry had data for thirteen (13 out of the sixteen (16 health facilities. We found that less than 15 percent of all patients actually had diabetic indicator tests done according to World Health Organization (WHO standards. The overall prevalence of T2DM was 20.8 per 1000 population. The highest prevalence of diabetes occurred at the northeastern tip of the island. In addition 57.58% of patients with T2DM resided inland and 40.75% of patients residing on the coastal areas. Conclusions: In conclusion, we provide evidence that the data collected by the diabetes registry although lacking in many areas was adequate for spatial epidemiological analysis.
Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C
Twins traditionally retain a special status in many African societies. In Guinea-Bissau, twins are often well regarded yet still suffer from a very high mortality, especially in the perinatal and infant period. At the Bandim Health Project, a health and demographic surveillance site, we have...... recently established one of the first twin registries in Sub-Saharan Africa. Our short-term aim is to describe twin mortality and morbidity in order to design appropriate health interventions. Our long-term goal is a large-scale database to explore the pathogenesis of prevalent diseases; for example......, diabetes mellitus, metabolic syndrome, and infectious diseases such as HIV, tuberculosis, and malaria. A major focus area is also the etiology of low birth weight and how epigenetic processes might modulate the consequences of low birth weight in Sub-Saharan Africa. For this, monozygotic twin studies...
Kristensen, Anders Elgaard; Larsen, Jacob Moesgaard; Nielsen, Jens Cosedis
AIMS: The validity of registry data on defibrillator lead performance is described only sparsely, despite its clinical importance. This study investigated the validity of defibrillator lead performance registry data in a nationwide and population-based registry. METHODS AND RESULTS: We identified...... all reported surgical interventions due to defibrillator lead events in the Danish Pacemaker and ICD Register (DPIR) from 2000 to 2013. Medical records of all patients (n = 753) were examined blinded for 5 predefined intervention types and 18 reasons for lead intervention. The overall level...... of agreement for the types of lead intervention had a positive predictive value (PPV) of 89.4% [95% confidence interval (CI): 87.0-91.5%] and an adjusted agreement (κ value) of 0.81 (95% CI: 0.77-0.85) representing an almost perfect match. Regarding the reasons for lead intervention, the overall PPV was 63...
Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten
AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...
Mann, Steven A; McCleskey, Brandi; Marques, Marisa B; Adamski, Jill
Apheresis was first performed as a therapeutic procedure in the 1950s. The first national therapeutic apheresis (TA) registry was established in Canada in 1981 and other national registries followed, including two attempts at establishing an international TA registry. There is no national registry in the United States. Our large, academic, tertiary hospital has a very active TA service. We created a TA database to track all procedures performed by the apheresis service by transferring data from paper appointment logs and the electronic medical records into a Microsoft Access database. Retrospective data from each TA procedure performed at UAB from January 1, 2003 through December 31, 2012 were entered, including the type of procedure, indication, date, and patient demographics. Microsoft Excel was used for data analysis. During the 10-year period, our TA service treated 1,060 patients and performed 11,718 procedures. Of these patients, 70% received therapeutic plasma exchange (TPE), 21% received extracorporeal photopheresis (ECP), 4.5% received red cell exchange (RCE), 4.2% received leukocytapheresis, and 0.6% underwent platelet depletion. Among the procedures, 54% were TPEs, 44% were ECPs, 1.3% were RCEs, 0.5% were leukocytaphereses, and 0.1% were platelet depletions. According to the current literature, national and international TA use is underreported. We believe that the UAB TA registry provides useful information about TA practices in our region and can serve as a model for other institutions. Furthermore, data from multiple institutional registries can be used for clinical research to increase the available evidence for the role of TA in various conditions. J. Clin. Apheresis 31:516-522, 2016. © 2015 Wiley Periodicals, Inc.
The author stresses the importance of DPCM 10 December 2002 no.308, which determines the format and the rules to fill the registry for the cases of asbestos-related mesothelioma, according to art 36, comma 3, DLgs 277/91. The Author admits the usefulness of such a registry, but comments that its official approval came very late, because it actually was started in 1993 by ISPESL (The Higher Institute for Prevention and Safety of Labor), after the approval of DLgs 277/91. According to ISPESL initiative, all cases of mesothelioma and related circumstances were (and are) collected through a periferal information net operated by COR's.
Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J
BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...
Patterns of risk of cancer in patients with metal-on-metal hip replacements versus other bearing surface types: a record linkage study between a prospective joint registry and general practice electronic health records in England.
Full Text Available BACKGROUND: There are concerns that metal-on-metal hip implants may cause cancer. The objective of this study was to evaluate patterns and timing of risk of cancer in patients with metal-on-metal total hip replacements (THR. METHODS: In a linkage study between the English National Joint Registry (NJR and the Clinical Practice Research Datalink (CPRD, we selected all THR surgeries (NJR between 2003 and 2010 (n = 11,540. THR patients were stratified by type of bearing surface. Patients were followed up for cancer and Poisson regression was used to derive adjusted relative rates (RR. RESULTS: The risk of cancer was similar in patients with hip resurfacing (RR 0.69; 95% Confidence Interval [CI] 0.39-1.22 or other types of bearing surfaces (RR 0.96; 95% CI 0.64-1.43 compared to individuals with stemmed metal-on-metal THR. The pattern of cancer risk over time did not support a detrimental effect of metal hip implants. There was substantial confounding: patients with metal-on-metal THRs used fewer drugs and had less comorbidity. CONCLUSIONS: Metal-on-metal THRs were not associated with an increased risk of cancer. There were substantial baseline differences between the different hip implants, indicating possibility of confounding in the comparisons between different types of THR implants.
U.S. Department of Health & Human Services — SUMMARY DDOD use case request to improve National Death Registry for use with outcomes research. WHAT IS A USE CASE? A “Use Case” is a request that was made by the...
Full Text Available Peter Kent,1 Alice Kongsted,1,2 Tue Secher Jensen,2,3 Hanne B Albert,4 Berit Schiøttz-Christensen,3 Claus Manniche3 1Department of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark; 2Nordic Institute of Chiropractic and Clinical Biomechanics, Odense, Denmark; 3Research Department, Spine Centre of Southern Denmark, Hospital Lillebaelt, Institute of Regional Health Research, University of Southern Denmark, Middelfart, Denmark; 4The Modic Clinic, Odense, Denmark Background: Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry (SpineData in a conservative care setting where more than 10,000 new cases of spinal pain are assessed each year. This paper describes the SpineData registry, summarizes the characteristics of its clinical population and data, and signals the availability of these data as a resource for collaborative research projects. Methods: The SpineData registry is an Internet-based system that captures patient data electronically at the point of clinical contact. The setting is the government-funded Medical Department of the Spine Centre of Southern Denmark, Hospital Lillebaelt, where patients receive a multidisciplinary assessment of their chronic spinal pain. Results: Started in 2011, the database by early 2015 contained information on more than 36,300 baseline episodes of patient care, plus the available 6-month and 12-month follow-up data for these episodes. The baseline questionnaire completion rate has been 93%; 79% of people were presenting with low back pain as their main complaint, 6% with mid-back pain, and 15% with neck pain. Collectively, across the body regions and measurement time points, there are approximately 1,980 patient-related variables in the database across a broad range of biopsychosocial factors. To date, 36 research
Dijk, WA; Kingma, T; Hooijschuur, CAM; Dassen, WRM; Hoorntje, JCA; van Gelder, LM
This paper deals with the validation of the information stored in the Netherlands central pacemaker patient database. At this moment the registry database contains information on more than 70500 patients, 85000 pacemakers and 90000 leads. The validation procedures consisted of an internal consistenc
Full Text Available BACKGROUND: The design and construction of novel biological systems by combining basic building blocks represents a dominant paradigm in synthetic biology. Creating and maintaining a database of these building blocks is a way to streamline the fabrication of complex constructs. The Registry of Standard Biological Parts (Registry is the most advanced implementation of this idea. METHODS/PRINCIPAL FINDINGS: By analyzing inclusion relationships between the sequences of the Registry entries, we build a network that can be related to the Registry abstraction hierarchy. The distribution of entry reuse and complexity was extracted from this network. The collection of clones associated with the database entries was also analyzed. The plasmid inserts were amplified and sequenced. The sequences of 162 inserts could be confirmed experimentally but unexpected discrepancies have also been identified. CONCLUSIONS/SIGNIFICANCE: Organizational guidelines are proposed to help design and manage this new type of scientific resources. In particular, it appears necessary to compare the cost of ensuring the integrity of database entries and associated biological samples with their value to the users. The initial strategy that permits including any combination of parts irrespective of its potential value leads to an exponential and economically unsustainable growth that may be detrimental to the quality and long-term value of the resource to its users.
Treffert, Darold A; Rebedew, David L
A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.
Klaiman, Tamar; Pracilio, Valerie; Kimberly, Laura; Cecil, Kate; Legnini, Mark
Policy makers, payers, and the general public are increasingly focused on health care quality improvement. Measuring quality requires robust data systems that collect data over time, can be integrated with other systems, and can be analyzed easily for trends. The goal of this project was to study effective tools and strategies in the design and use of clinical registries with the potential to facilitate quality improvement, value-based purchasing, and public reporting on the quality of care. The research team worked with an expert panel to define characteristics of effectiveness, and studied examples of effective registries in cancer, cardiovascular care, maternity, and joint replacement. The research team found that effective registries were successful in 1 or more of 6 key areas: data standardization, transparency, accuracy/completeness of data, participation by providers, financial sustainability, and/or providing feedback to providers. The findings from this work can assist registry designers, sponsors, and researchers in implementing strategies to increase the use of clinical registries to improve patient care and outcomes.
Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C.E.; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren
Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand. Here we present a community-driven curation effort, supported by ELIXIR—the European infrastructure for biological information—that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners. As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599
Full Text Available Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, plain text data for these records were retrieved to generate a gold standard. Record linkage error frequencies in the cancer registry were determined by comparison of the results of the routine linkage with the gold standard. Error rates were projected to larger registries.Results: In the sample studied, the homonym error rate was 0.015%; the synonym error rate was 0.2%. The F-measure was 0.9921. Projection to larger databases indicated that for a realistic development the homonym error rate will be around 1%, the synonym error rate around 2%.Conclusion: Observed error rates are low. This shows that effective methods to standardize and improve the quality of the input data have been implemented. This is crucial to keep error rates low when the registry’s database grows. The planned inclusion of unique health insurance numbers is likely to further improve record linkage quality. Cancer registration entirely based on electronic notification of records can process large amounts of data with high quality of record linkage.
Shah, Amit Aakash; Seiffert-Sinha, Kristina; Sirois, David; Werth, Victoria P; Rengarajan, Badri; Zrnchik, William; Attwood, Kristopher; Sinha, Animesh A
Pemphigus vulgaris (PV) is a rare, potentially life threatening, autoimmune blistering skin disease. The International Pemphigus and Pemphigoid Foundation (IPPF) has recently developed a disease registry with the aim to enhance our understanding of autoimmune bullous diseases with the long-term goal of acquiring information to improve patient care. Patients were recruited to the IPPF disease registry through direct mail, e-mail, advertisements, and articles in the IPPF-quarterly, -website, -Facebook webpage, and IPPF Peer Health Coaches to complete a 38-question survey. We present here the initial analysis of detailed clinical information collected on 393 PV patients. We report previously unrecognized gender differences in terms of lesion location, autoimmune comorbidity, and delay in diagnosis. The IPPF disease registry serves as a useful resource and guide for future clinical investigation.
Koch-Henriksen, N; Rasmussen, S; Stenager, E
The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...
... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...
Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S
The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....
The national cancer registry in Japan will commence operations in January 2016 under the Cancer Registry Promotion Act, which was established in December 2013. Although data on cancer incidence and survival rates in Japan have been available for limited regions for a long time, accurate nationwide data obtained from the national cancer registry database will contribute to the planning and evaluation of cancer control in Japan. It is expected that this database will be utilized in evaluating the quality of medical care for cancer patients, in assessing the accuracy of cancer screening, and in follow-up surveys in nationwide cohort studies. Furthermore, under the Cancer Registry Promotion Act, hospitals will be permitted to obtain vital patient information from data registered in the national cancer registry database, which will promote the publication of survival rates for cancer patients and accelerate research at hospitals. The founding of the Japanese national cancer registry is a landmark development in the promotion of cancer control and cancer research in Japan and it is essential that the Japanese population benefits from the information obtained from this database.
Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper
All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.
Gatz, Margaret; Harris, Jennifer R.; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L.; Snieder, Harold; Spiro, Avron; Butler, David A.
The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clini
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
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 (Cen...
Cebul, Randall D; Love, Thomas E; Einstadter, Douglas; Petrulis, Alice S; Corlett, John R
Studies of Medicaid expansion have produced conflicting results about whether the expansion is having a positive impact on health and the cost and efficiency of care delivery. To explore the issue further, we examined MetroHealth Care Plus, a Centers for Medicare and Medicaid Services (CMS) waiver program in Ohio composed of three safety-net organizations that enrolled 28,295 uninsured poor patients in closed-panel care during 2013. All participating organizations used electronic health records and patient-centered medical homes, publicly reported performance in a regional health improvement collaborative, and accepted a budget-neutral cap approved by CMS. We compared changes between 2012 and 2013 in achieving quality standards for diabetes and hypertension among 3,437 MetroHealth Care Plus enrollees to changes among 1,150 patients with the same conditions who remained uninsured in both years. Compared to continuously uninsured patients with diabetes, MetroHealth Care Plus enrollees with diabetes improved significantly more on composite standards of care and intermediate outcomes. Among enrollees with hypertension, blood pressure control improvements were insignificantly larger than those in the continuously uninsured group with hypertension. Across all 28,295 enrollees, 2013 total costs of care were 28.7 percent below the budget cap, providing cause for optimism that a prepared safety net can meet the challenges of Medicaid expansion. Project HOPE—The People-to-People Health Foundation, Inc.
UK Renal Registry 12th Annual Report (December 2009): chapter 12: epidemiology of methicillin resistant Staphylococcus aureus bacteraemia amongst patients receiving dialysis for established renal failure in England in 2008: a joint report from the UK Renal Registry and the Health Protection Agency.
Fluck, Richard; Wilson, Jennie; Tomson, Charles R V
From April 2007, all centres providing renal replacement therapy in England were asked to provide additional data on patients with Methicillin Resistant Staphylococcus aureus (MRSA) bacteraemia using a secure web based system established to capture data for the mandatory surveillance of MRSA bacteremia. From April 2008 until March 2009 171 discrete episodes of MRSA bacteraemia were identified from the Health Protection Agency database as being potentially associated with patients in established renal failure (ERF) requiring dialysis. Of 171 records, 18 records were rejected by renal centres as not being associated with patients on dialysis or as being duplicates of other records. Following data validation by centres, 139 patients had vascular access documented (no episodes of bacteraemia were recorded amongst patients receiving peritoneal dialysis). Of these patients, 30.2% were utilising an arteriovenous fistula or graft and 69.8% were dialysing on a nontunnelled or tunnelled venous catheter. Two of the patients on arteriovenous fistulae had used venous catheters in the prior 28 days. Eleven patients had more than one episode in the year and accounted for 30 (20%) of the episodes of MRSA bacteraemia. Overall there was a reduction of 22% in episodes from the previous year. The median centre-specific rate of MRSA bacteraemia was 0.64 (range 0-3.49) episodes per 100 haemodialysis patients per year, and 0.55 (range 0-2.89) episodes per 100 dialysis (haemodialysis and peritoneal dialysis combined) patients per year. The rate of MRSA bacteraemia in patients requiring long term dialysis continues to fall within the prevalent dialysis population in England, but there is still marked variation in centrespecific rates. (c) 2010 S. Karger AG, Basel.
UK Renal Registry 16th annual report: chapter 15 epidemiology of reported infections amongst patients receiving dialysis for established renal Failure in England from May 2011 to April 2012: a joint report from Public Health England and the UK renal registry.
Crowley, Lisa; Pitcher, David; Wilson, Jennie; Guy, Rebecca; Fluck, Richard
Infection remains one of the leading causes of mortality in established renal failure patients receiving renal replacement therapy (RRT). Since 2007, centres providing RRT in England have been asked to provide additional data on patients with methicillin resistant Staphylococcus aureus (MRSA) bacteraemia. Since 2011, the option to provide data on methicillin sensitive Stapylococcus aureus (MSSA) and Escherichia coli bacteraemia, as well as Clostridium difficile infection has also been available. Data were submitted to Public Health England by laboratories via HCAI-DCS including whether the patients were receiving dialysis. Individual renal centres then confirmed the record either directly via the database or after being contacted. Data were collected for the period of the 1st May 2011 to the 30th April 2012. There were 49 episodes of MRSA bacteraemia, an overall rate of 0.22 per 100 dialysis patients per year, representing a further year on year fall in MRSA rate. There were a higher number of MSSA episodes, 322 in total, with an overall rate of 1.15 per 100 dialysis patients per year. The number of episodes and overall rate of E. coli and C. difficile were 284 and 0.92 per 100 prevalent dialysis patients per year and 172 and 0.61 per 100 prevalent dialysis patients per year respectively. In each infection type the presence of a central venous catheter appeared to correlate with an elevated risk. Data are presented from one year of infections reported to PHE. The rate of MRSA bacteraemia episodes in England continues to fall. There was a higher rate of MSSA infections amongst renal dialysis patients. Findings from the first year of E. coli and C. difficile data collection are also reported. Future cycles will give us a further idea of the trend in incidences of these infections. © 2014 S. Karger AG, Basel.
Full Text Available Background: Breast cancer is the most common female cancer worldwide. Survival rate of breast cancer, especially as an indicator of the successful implementation of screening, diagnosis and treatment programs, has been at the center of attention of public health experts Material and Methods: In a survival study, the records of breast cancer cases in cancer registry system of Bushehr Province were extracted during 2001, March to 2013, September. These records were linked and matched with records of death registry system. After determining patients, status regarding being alive or dead, survival analysis was done. Life table, Kaplan-Mayer analysis, log rank and Breslow tests were used for computing and comparing survival rates. Results: In 300 recorded breast cancer cases, mean and standard deviation of age was 51.26±13.87. Survival rates were 95, 88, 78, 73 and 68 percent since the first year through the fifth year, respectively. Mean survival was 87.20 months (95% CI= 81.28- 93.12. There was no significant difference in mean survival regarding age and different geographical areas. Conclusion: Although survival rates of registered breast cancer patients in Bushehr Province are similar to other provinces, they are far from those of developed countries. This situation demands more extensive efforts regarding public education and improving the process of diagnosis, treatment and care of patients especially during first two years after diagnosis.
Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans Henrik;
-CCTR, showed that coronary CT angiographies accounted for only 23% of all nonregistered cardiac CTs, indicating >90% completeness of coronary CT angiographies in the WDHR-CCTR. The completeness of individual variables varied substantially (range: 0%-100%), but was >85% for more than 70% of all variables. Using......BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... expected numbers; and 4) positive predictive values as well as negative predictive values of 19 main patient and procedure variables. RESULTS: By December 31, 2012, almost 22,000 cardiac CTs with up to 40 variables for each procedure have been registered. Of these, 87% were coronary CT angiography...
Gimsing, Peter; Holmström, Morten O; Klausen, Tobias Wirenfelt
is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. STUDY POPULATION: All newly......, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. DESCRIPTIVE DATA: Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients......AIM: The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim...
Bak, Marie; Ibfelt, Else Helene; Stauffer Larsen, Thomas;
AIM: The Danish National Chronic Myeloid Neoplasia Registry (DCMR) is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital...... of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival - disease-specific variables - as well as variables that are identical for all chronic myeloid malignancies. DESCRIPTIVE DATA: By the end of 2014, the DCMR contained data...... on 2,690 patients with an inclusion rate of ∼500 patients each year. Since the registry was established, annual reports have shown consistently high national coverage and data completeness, ≥90% and ≥88%, respectively. CONCLUSION: The DCMR is a national database used for monitoring the quality...
Full Text Available Abstract Background 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. Methods 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. Results 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. Conclusion Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher
Its creation builds on the existing registries as well as on the structure of health care in the Slovak Republic. With the protection of personal data in mind, the collection of data will be carried out by the National Centre of Health Information (NCHI, which will also use the existing tool in the process of creation. Thanks to the cooperation between NCHI and the Slovak Society of Medical Genetics, NCHI developed separate reporting forms on rare diseases according to OMIM (Online Mendelian Inheritance in Man and ORPHANET rare disease coding (ORPHA codes of rare diseases, and the International classification of diseases code (ICD 10. The activities also include cooperation with the existing registries (part of which are rare diseases. For example National Registry of Congenital Developmental Heart Defects, national register of neuromuscular disorders, oncologic register or register of diabetes mellitus. Gathering the information from these registries we will extend the data about rare diseases in the Slovak republic. At the international level the participation in the European Surveillance of Congenital Anomalies (EUROCAT is important.
Natter, Marc D; Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E; Wallace, Carol A; Warren, Robert W; Weber, Griffin M; Mandl, Kenneth D
Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.
Full Text Available The introduction of new pharmacotherapy entities in the last decade accentuate the necessity to set up treatment guidelines based on real life evidence. Randomized controlled trials remain golden standard of a research. Data derived from studies aiming on daily clinical practice should bring needed, added value. Disease prevalence growth, due to increased life expectancy, better diagnostic procedures and earlier medical intervention, as well as ever growing demand for highly priced, sophistically produced drugs put stress on healthcare budgets even in developed countries. Large databases commonly called - therapy registries are implemented to collect data on therapy effectivity in terms of effectiveness, safety and patient long-term on therapy survival. Registries importance rose together with biological therapies introduction. New in class molecules entered the market conditionally being obliged to provide additional e.g. safety data. Such procedures require involvement of many different professionals, e.g. physicians, professional medical bodies, IT experts, database administrators, statisticians and government institutions. Paper based, followed by computer based forms were distributed among physicians to collect these data. eHealth technologies provide physicians with centralized, more intuitive applications. The particularities of different diagnosis caused great variations within each specific registry launched. Important information was missing since they were pointed out as optional and many were redundant causing frustration among physicians due to inadequate administrative workload. The main objective of this work was to set up the therapy registry standards and procedures. Methodology of „ideal“ moderate to severe plaque psoriasis biology therapy registry development, introduction, administration and evaluation was prepared to assist any government institution or professional body when planning registry deployment. Electronic
Health Care System Delay and Heart Failure in Patients With ST-Segment Elevation Myocardial Infarction Treated With Primary Percutaneous Coronary Intervention: Follow-up of Population-Based Medical Registry Data
Terkelsen, Christian Juhl; Jensen, Lisette Okkels; Hansen, Hans-Henrik Tilsted;
In patients with ST-segment elevation myocardial infarction (STEMI), delay between contact with the health care system and initiation of reperfusion therapy (system delay) is associated with mortality, but data on the associated risk for congestive heart failure (CHF) among survivors are limited....
Kathren, R.L.; Harwick, L.A.; Toohey, R.E.; Russell, J.J.; Filipy, R.E.; Dietert, S.E.; Hunacek, M.M.; Hall, C.A.
The Registries originated in 1968 as the National Plutonium Registry with the name changed to the United States Transuranium Registry the following year to reflect a broader concern with the heavier actinides as well. Initially, the scientific effort of the USTR was directed towards study of the distribution and dose of plutonium and americium in occupationally exposed persons, and to assessment of the effects of exposure to the transuranium elements on health. This latter role was reassessed during the 1970`s when it was recognized that the biased cohort of the USTR was inappropriate for epidemiologic analysis. In 1978, the administratively separate but parallel United States Uranium Registry was created to carry out similar work among persons exposed to uranium and its decay products. A seven member scientific advisory committee provided guidance and scientific oversight. In 1992, the two Registries were administratively combined and transferred from the purview of a Department of Energy contractor to Washington State University under the provisions of a grant. Scientific results for the first twenty-five years of the Registries are summarized, including the 1985 publication of the analysis of the first whole body donor. Current scientific work in progress is summarized along with administrative activities for the period.
Burns, Kristin M; Bienemann, Lauren; Camperlengo, Lena; Cottengim, Carri; Covington, Theresa M; Dykstra, Heather; Faulkner, Meghan; Kobau, Rosemarie; Erck Lambert, Alexa B; MacLeod, Heather; Parks, Sharyn E; Rosenberg, Ellen; Russell, Mark W; Shapiro-Mendoza, Carrie K; Shaw, Esther; Tian, Niu; Whittemore, Vicky; Kaltman, Jonathan R
Knowledge gaps persist about the incidence of and risk factors for sudden death in the young (SDY). The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: (1) describe the incidence of SDY in the United States by using population-based surveillance; (2) compile data from SDY cases to create a resource of information and DNA samples for research; (3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases; (4) develop partnerships between local, state, and federal stakeholders toward a common goal of understanding and preventing SDY; and (5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. Built on existing Child Death Review programs and as an expansion of the Sudden Unexpected Infant Death Case Registry, the SDY Case Registry achieves its goals by identifying SDY cases, providing guidance to medical examiners/coroners in conducting comprehensive autopsies, evaluating cases through child death review and an advanced review by clinical specialists, and classifying cases according to a standardized algorithm. The SDY Case Registry also includes a process to obtain informed consent from next-of-kin to save DNA for research, banking, and, in some cases, diagnostic genetic testing. The SDY Case Registry will provide valuable incidence data and will enhance understanding of the characteristics of SDY cases to inform the development of targeted prevention efforts. Copyright © 2017 by the American Academy of Pediatrics.
Lu, Christine Y; Law, Michael R; Soumerai, Stephen B; Graves, Amy Johnson; LeCates, Robert F; Zhang, Fang; Ross-Degnan, Dennis; Adams, Alyce S
Some Medicaid programs have adopted prior-authorization (PA) policies that require prescribers to request approval from Medicaid before prescribing drugs not included on a preferred drug list. This study examined the association between PA policies for lipid-lowering agents in Michigan and Indiana and the use and cost of this drug class among dual enrollees in Medicare and Medicaid. Michigan and Indiana claims data from the Centers for Medicare and Medicaid Services were assessed. Michigan Medicaid instituted a PA requirement for several lipid-lowering medications in March 2002; Indiana implemented a PA policy for drugs in this class in September 2002. Although the PA policies affected some statins, they predominantly targeted second-line treatments, including bile acid sequestrants, fibrates, and niacins. Individuals aged ≥18 years who were continuously dually enrolled in both Medicare and Medicaid from July 2000 through September 2003 were included in this longitudinal, population-based study, which included a 20-month observation period before the implementation of PA in Michigan and a 12-month follow-up period after the Indiana PA policy was initiated. Interrupted time series analysis was used to examine changes in prescription rates and pharmacy costs for lipid-lowering drugs before and after policy implementation. A total of 38,684 dual enrollees in Michigan and 29,463 in Indiana were included. Slightly more than half of the cohort were female (Michigan, 53.3% [20,614/38,684]; Indiana, 56.3% [16,595/29,463]); nearly half were aged 45 to 64 years (Michigan, 43.7% [16,921/38,684]; Indiana, 45.2% [13,321/29,463]). Most subjects were white (Michigan, 77.4% [29,957/38,684]; Indiana: 84.9% [25,022/29,463]). The PA policy was associated with an immediate 58% reduction in prescriptions for nonpreferred medications in Michigan and a corresponding increase in prescriptions for preferred agents. However, the PA policy had no apparent effect in Indiana, where there had
AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...
... other provisions, requires health insurance issuers offering individual or group coverage to submit annual reports to the Secretary on the percentages of premiums that the coverage spends on reimbursement... enrollees if this spending does not meet minimum standards for a given plan year. Section 1562 of PPACA...
Medical Toxicology and Public Health-Update on Research and Activities at the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry : Environmental Exposures among Arctic Populations: The Maternal Organics Monitoring Study in Alaska.
Anwar, Mehruba; Ridpath, Alison; Berner, James; Schier, Joshua G
Evidence suggests that in-utero exposure to environmental chemicals, such as persistent organic pollutants (POPs), heavy metals, and radionuclides, that might bioaccumulate in the mother may increase a newborn's risk of adverse developmental, neurological, and immunologic effects. Chemical contamination of bodies of water and strong ocean currents worldwide can drive these chemicals from lower latitudes to Arctic waters where they accumulate in common traditional subsistence foods. In response to concerns of the people from Alaska of the effects of bio-accumulated chemicals on their children, the Maternal Organics Monitoring Study(MOMS) was developed. The objective of the study was to assess the risks and benefits associated with the population's subsistence diet. Data analysis of biological samples at the CDC's NCEH laboratory and maternal questionnaires is ongoing. Results will be provided to Alaska Native communities to help support public health actions and inform future interventions and research.
Crocetti, Emanuele; Buzzoni, Carlotta
The study of cluster requires the ability to identify, with accuracy and completeness, the health events of interest and their geographical location and time of occurrence. For rare and complex diseases, such as childhood cancers, it is possible to observe a significant health migration from the place of residence, which makes the detection even more complex. The best tool to identify these rare diseases is represented by cancer registries (CRs). In fact, CRs collect, through many sources, information related to tumours that arise in the population resident in their areas of activity. The number of the sources of information has increased thanks to the computerization of health services. The availability of multiple sources of information increases the completeness of data collection overcoming the limits of a single source, and makes it possible to describe the diagnostic-therapeutic course and the outcome of the cases. Among all data sources, for childhood cancers the model 1.01, which summarize the clinical information of the cases treated in one of the Italian Association of paediatric haematology and oncology (AIEOP) centres, is relevant. Moreover, CRs produce reliable and comparable data due to the use of international rules and classifications for the definition of the topography and morphology of cancer, for the date of diagnosis, and for quality checks. In Italy, the Italian association of cancer registries (AIRTUM) coordinates the activities of 45 population CRs, both general and specialized (by age or tumour type). AIRTUM involves a population of over 6.7 million citizens under the age of 20 years, approximately 60% of the total resident population. AIRTUM plays a role of coordination, support, and harmonization for Italian CRs through training, accreditation, and a shared database, it promotes and participates in national and international collaboration involving scientific societies (AIEOP, Italian Association of medical oncology - AIOM, Italian
Kim, Hyun Sook; Lyoo, Chul Hyoung; Lee, Phil Hyu; Kim, Sang Jin; Park, Mee Young; Ma, Hyeo-Il; Lee, Jae Hyeok; Song, Sook Kun; Baik, Jong Sam; Kim, Jin Ho; Lee, Myung Sik
Objective Huntington’s disease (HD) is a rare neurological disorder, and its current status in Korea is not well investigated. This study aims to determine the prevalence and incidence of HD and to investigate the clinical features of HD patients in Korea. Methods We estimated the crude prevalence and annual incidence of HD based on the databases of the Rare Diseases Registry (RDR) and the National Health Insurance (NHI). The clinical data of genetically confirmed HD patients was collected fr...
Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon
A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.
Zhou, Xiaoyuan; Mao, Zhengzhong; Rechel, Bernd; Liu, Chaojie; Jiang, Jialin; Zhang, Yinying
Since 2003, China has experimented in some of the country's counties with the private administration of the New Cooperative Medical Scheme (NCMS), a publicly subsidized health insurance scheme for rural populations. Our study compared the effectiveness and efficiency of private vs public administration in four counties in one of China's most affluent provinces in the initial stage of the NCMS's implementation. The study was undertaken in Ningbo city of Zhejiang province. Out of 10 counties in Ningbo, two counties with private administration for the NCMS (Beilun and Ninghai) were compared with two others counties with public administration (Zhenhai and Fenghua), using the following indicators: (1) proportion of enrollees who were compensated for inpatient care; (2) average reimbursement-expense ratio per episode of inpatient care; (3) overall administration cost; (4) enrollee satisfaction. Data from 2004 to 2006 were collected from the local health authorities, hospitals and the contracted insurance companies, supplemented by a randomized household questionnaire survey covering 176 households and 479 household members. In our sample counties, private administration of the NCMS neither reduced transaction costs, nor improved the benefits of enrollees. Enrollees covered by the publicly administered NCMS were more likely to be satisfied with the insurance scheme than those covered by the privately administered NCMS. Experience in the selected counties suggests that private administration of the NCMS did not deliver the hoped-for results. We conclude that caution needs to be exercised in extending private administration of the NCMS.
Kostuj, T; Kladny, B; Hoffmann, R
The register network of the German Society for Orthopaedics and Trauma (DGOU) consists of 14 registries that cover the various fields of traumatology and elective orthopedics. In addition to registries that focus on implants and types of diseases without age limitations, there are also registries dealing with special diseases in children and adolescents as well as the special needs of elderly patients with fractures. The registries serve as instruments for outcome research and quality assurance and can be used to develop treatment recommendations on a high level of evidence. The objective of the network is to exchange experience that facilitates the establishment of new registers, to pool expertise and to conserve resources.
ASSET LEVELS GROWING: In 2009, there was $7.1 billion in consumer-driven health plans (CDHPs), which include health savings accounts (or HSAs) and health reimbursement arrangements (or HRAs), spread across 5 million accounts. This is up from 2006, when there were 1.2 million accounts with $835.4 million in assets, and 2008, when 4.2 million accounts held $5.7 billion in assets. AVERAGE ACCOUNT BALANCE LEVELING OFF: Increases in average account balances appear to have leveled off. In 2006, account balances averaged $696. They increased to $1320 in 2007, a 90 percent increase. Account balances averaged $1356 in 2008 and $1419 in 2009, 3 percent and 5 percent increases, respectively. TYPICAL ENROLLEE: The typical CDHP enrollee was more likely than traditional plan enrollees to be young, unmarried, higher-income, educated, and exhibit healthy behavior. No differences were found between CDHPs enrollees and traditional plan enrollees with respect to gender, race, and presence of children. MORE ROLLOVERS: Overall, the number of people with a rollover, as well as the total level of assets being rolled over, have been increasing. The average rollover increased from $592 in 2006 to $1295 in 2009. DIFFERENCES IN ACCOUNT BALANCES: Men tend to have higher account balances than women, account balances increase with household income, education has a significant impact on account balances independent of income and other variables, and no statistically significant differences in account balances were found by smoking, obesity, or the presence of chronic health conditions. Individuals who developed a budget to manage their health care expenses had a higher account balance ($1726) than those who did not ($1428), but otherwise, no statistically significant differences in average account balances were found between individuals who exhibited various aspects of cost-conscious decision-making behaviors and those who did not. DIFFERENCES IN ROLLOVER AMOUNTS: Men rolled over more money than
Ilyin, L. A.; Kiselev, M. F.; Panfilov, A. P.; Kochetkov, O. A.; Ivanov, A. A.; Grinev, M. P.; Soloviev, V. Y.; Semenov, V. G.; Tukov, A. R.; Koshuurnikova, N. A.; Takhauov, R. M.; Melnikov, G. Y.
Epidemiological studies of nuclear industry personnel contain the significant abilities to assess the prolonged radiation exposure effects in the human health. The clarification of these assessments and following improvements of the scientific justification of radiation regulation require the expansion of factual basis of the research currently, Branch Medical Dosimetric Registry (BMDR) of atomic industry and nuclear power employees is under the development in Russian to compose a number of regional registries. This work is coordinated by the State Research Center- Institute of Biophysics (Moscow). The first phase of this project was devoted to the forming of the regional registry of Mayak PA employees (Ozersk, South Uranl region). the employee registries of Siberian Chemical Plant (SCP, Seversk, Tomsk region) and Mountain Chemical Plant (MCP, Zheleznogorsk, Krasnoyarsk region) are at the finalization. At later phases, BMDR will be added by the information on other enterprises and on operating NPP too. The paper describes the structure, general issues of the forming and current status of BMDR. The comparison of major BMDR features versus LSS registry (which is the one of basic components for international radiation protection recommendations and current radiation protection standards) demonstrates that BMDR information can be more preferable to assess the significance of the man made radiation at high and intermediate dose ranges. Particularly, the number of employees (20-40 year age range) exposed to doses specific to detectable radiation health effects (above 2000 mSv) is almost ten times more than that for LSS cohort. Besides, the health monitoring was elaborated since the employment start point (Whereas, since year 5 for LSS cohort). BMDR dose records were measured (against LSS reconstructed doses) and the employee exposure duration was equal to years and decade (alternatively to momentary exposure recorded in LSS). BMDR data quantity and quality correspond to
Goddeeris, John H; McMorrow, Stacey; Kenney, Genevieve M
The introduction of Marketplaces under the Affordable Care Act greatly expanded individual-market health insurance coverage in 2014, but millions of adults continued to purchase individual coverage outside of the Marketplaces. They were more likely to be male, be white, have higher incomes, and be in excellent or very good health, compared to Marketplace enrollees. Project HOPE—The People-to-People Health Foundation, Inc.
Hannah K. Weir, PhD
Full Text Available Introduction The Centers for Disease Control and Prevention’s National Program of Cancer Registries is a federally funded surveillance program that provides support and assistance to state and territorial health departments for the operation of cancer registries. The objective of this study was to identify factors associated with the Centers for Disease Control and Prevention’s costs to report cancer cases during the first 5 years of the National Program of Cancer Registries. Methods Information on expenditures and number of cases reported through the National Program of Cancer Registries was used to estimate the average cost per case reported for each state program. Additional information was obtained from other sources, and regression analyses were used to assess the contribution of each factor. Results Average costs of the National Program of Cancer Registries differed substantially among programs and were inversely associated with the number of cases reported (P < .001. The geographic area of the state was positively associated with the cost (P = .01, as was the regional cost of living (P = .08, whereas the program type (i.e., enhancement or planning was inversely associated with cost (P = .08. Conclusion The apparent existence of economies of scale suggests that contiguous state programs might benefit from sharing infrastructure and other fixed costs, such as database management resources, depending on the geographic area and population size served. Sharing database management resources might also promote uniform data collection and quality control practices, reduce the information-sharing burden among states, and allow more resources to be used for other cancer prevention and control activities.
Chapter 12 Epidemiology of Staphylococcus aureus bacteraemia amongst patients receiving dialysis for established renal failure in England in 2009 to 2011: a joint report from the Health Protection Agency and the UK Renal Registry.
Crowley, Lisa; Wilson, Jennie; Guy, Rebecca; Pitcher, David; Fluck, Richard
Infection remains one of the leading causes of death in patients with end-stage renal failure (ESRF) receiving dialysis. Since April 2007, all centres providing renal replacement therapy in England have been required to provide additional data on patients with Methicillin Resistant Staphylococcus Aureus (MRSA) infection. From January 2011 this has also been required for patients with Methicillin Sensitive Staphylococcus Aureus (MSSA). MRSA data for 2009-2011 and the first 6 months of MSSA data are reported. Potential bacteraemia were identified by the Health Protection Agency based on clinical details provided and the clinical setting. The records were 'shared' with the parent renal centre who then complete the additional data on the HCAI-DCS website. Centres were also contacted by phone and email as a further validation step. From April 2009-2010 there were 77 confirmed episodes of MRSA bacteraemia at a median rate of 0.25 per 100 prevalent dialysis patients. This number decreased to 61 episodes between April 2010-2011 at a median rate of 0 per 100 prevalent dialysis patients. Overall there has been an 82% reduction in absolute episodes since the first year of mandatory reporting in 2007. The incidence of bacteraemia in patients with a central venous catheter was approximately six fold higher than in those with an AV fistula. From 1st January to 30th June 2011 there were 160 episodes of MSSA bacteraemia with a rate of 1.06 episodes per 100 dialysis patients, again the risk was six fold higher in patients with a CVC. Overall rates of MRSA bacteraemia in dialysis patients continued to fall although there remained variation between renal centres. Initial data from the early days of MSSA reporting suggested high rates of infection and an even greater variation between renal centres. This requires confirmation from future data collection. Copyright © 2012 S. Karger AG, Basel.
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
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.
Full Text Available Paul J Hauptman,1 Arthur Greenberg,2 Joseph G Verbalis,3 Alpesh Amin,4 Samuel Sigal,5 Jun Chiong,6 Sandra Chase,7 Joseph Dasta81Saint Louis University School of Medicine, St Louis, MO, USA; 2Duke University Medical Center, Durham, NC, USA; 3Georgetown University Medical Center, Washington, DC, USA; 4University of California, Irvine, CA, USA; 5New York University Langone Medical Center, New York, NY, USA; 6Loma Linda University, Loma Linda, CA, USA; 7Otsuka America Pharmaceutical, Inc, Princeton, NJ, USA; 8University of Texas at Austin, TX, USABackground: Hyponatremia is a prevalent condition in patients hospitalized across a broad range of conditions, including heart failure, cirrhosis, and the syndrome of inappropriate antidiuretic hormone (SIADH secretion. Whether present on admission or developing during hospitalization, hyponatremia has been associated with increased mortality, longer hospital stays, and higher costs. Little is known, however, about its management and outcomes outside of clinical trial settings.Methods: The Hyponatremia Registry (HN Registry is a prospective, observational, multicenter, multinational study of patients hospitalized with either hypervolemic hyponatremia (cirrhosis and heart failure in the United States or euvolemic hyponatremia (SIADH in both the United States and Europe. Study enrollment began in September 2010 at community, tertiary, and academic medical centers. Overall, the HN Registry is expected to enroll >5,000 patients with hyponatremia, at >280 sites. Data will be used to characterize demographic and clinical characteristics of patients hospitalized with hyponatremia, evaluate the comparative effectiveness of available treatment modalities, and document and compare length of hospital stay as a reflection of resource use associated with hospital management.Discussion: Despite better understanding of the clinical consequences, economic impact, and prognostic significance of euvolemic and hypervolemic
Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang
The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....
Kremer, Joel M
The Corrona US national registry collects data concerning patient status from both the rheumatologist and patient at routine clinical encounters. Corrona has functioning disease registries in rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies, psoriasis and inflammatory bowel disease. Corrona merges data concerning long-term effectiveness and safety, as well as comparative and cost effectiveness of agents to treat these autoimmune diseases.
V.S. Stel; A. Kramer; C. Zoccali; K.J. Jager
Introduction: This paper provides a summary of the 2006 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry report. Methods: Data on renal replacement therapy (RRT) were available from 50 national and regional registries in 28 countries in Europe and bordering
Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an u
... Sign up Search: Defense Centers of Excellence For Psychological Health & Traumatic Brain Injury U.S. Department of Defense ... Reports Program Evaluation DoD/VA PH & TBI Registry Psychological Health About Psychological Health Psychological Health Resources About ...
Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.
Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service
Full Text Available Peter Gimsing,1 Morten O Holmström,2 Tobias Wirenfelt Klausen,3 Niels Frost Andersen,4 Henrik Gregersen,5 Robert Schou Pedersen,6 Torben Plesner,7 Per Trøllund Pedersen,8 Mikael Frederiksen,9 Ulf Frølund,2 Carsten Helleberg,3 Annette Vangsted,1 Peter de Nully Brown,1 Niels Abildgaard,10 On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark Aim: The Danish National Multiple Myeloma Registry (DMMR is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research.Study population: All newly diagnosed patients with multiple myeloma (MM, smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome, monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with
Hollak, C.E.M.; Aerts, J.M.F.G.; Aymé, S.; Manuel, J.
Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and
Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik
BACKGROUND: Congenital heart disease (CHD) occurs in approximately 1% of all live births, and 3% to 8% of these have until now been considered familial cases, defined as the occurrence of two or more affected individuals in a family. The validity of CHD diagnoses in Danish administrative registry...... identifier in the Danish registries, thus enabling connection of information from several registries. Utilizing the CPR number, we identified Danish patients with familial CHD and reviewed each patient's file. We compared diagnoses from the registries with those manually assigned, which enabled calculation...... of nine of all cases with CHD are familial, and we also found that 36% of individuals with CHD in administrative medical registries are misclassified, which distort the RRR in simulated scenarios....
Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa
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.
Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina;
AIM OF DATABASE: To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations. TARGET POPULATION: The target population includes all patients diagnosed with diabetes....... Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments...... and in private ophthalmological practice. In 2014-2015, DiaBase included data collected from 77,968 diabetes patients. MAIN VARIABLES: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data...
Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per
AIM: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids) are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. STUDY POPULATION: The study population consists of all...... experiencing severe hypoglycemia, diabetic nephropathy, and retinopathy. CONCLUSION: The systematic collection of data in DanDiabKids documents improved quality of care over the last 12 years, despite a substantial increase in the number of patients cared for by pediatric departments in Denmark, fulfilling...... children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (diabetes...
de Vries, Esther; Pardo, Constanza; Arias, Nelson; Bravo, Luis Eduardo; Navarro, Edgar; Uribe, Claudia; Yepez, María Clara; Jurado, Daniel; Garci, Luz Stella; Piñeros, Marion; Edwards, Patrick; Beebe, Maggie Cole; Tangka, Florence; Subramanian, Sujha
Maintaining population-based registries requires adequate and sustained resources; however, to date there has been no systematic evaluation to identify the resource needs for cancer registration in most countries, including Colombia. A systematic assessment of the costs can quantify the funding required and identify processes to improve efficiency of cancer registries. The Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) was tailored specifically for the Colombian registries and was used to collect resource use data from five regional population-based cancer registries: Barranquilla, Bucaramanga, Cali, Manizales, and Pasto. The registries provided cost data for the year 2013 and cancer cases corresponding to the year 2010. We identified an almost threefold variation in the average cost per case (77,932 to 214,082 Colombian pesos or US $41 to US $113 in 2013) across the registries, but there were also substantial differences in data collection approaches, types of data collected, and activities performed. Cost per inhabitant varied between 95 and 415 Colombian pesos (US $0.05 to US $0.22). Between 20% and 45% of the total cost was due to fixed cost activities. The detailed economic information presented in this study constitutes a valuable source of activity-based cost data that registries can use to compare operations, assess key factors that lead to differences in cost per case, and identify potential approaches to improve efficiencies. Furthermore, the knowledge gained from studying the Colombian registries can help inform the planning and operations of other registries in the region. Published by Elsevier Ltd.
Jardim, Paulo César Brandão Veiga; de Souza, Weimar Kunz Sebba Barroso; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V. Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel dos Santos
Background: A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. Objective: To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. Methods: National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of
Krasnow, Ruth E; Jack, Lisa M; Lessov-Schlaggar, Christina N; Bergen, Andrew W; Swan, Gary E
The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same- and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples.
Paulo César Brandão Veiga Jardim
Full Text Available Abstract Background: A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. Objective: To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP control, and adherence to treatment. Methods: National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of
Wright, S. E.; Windhouwer, Menzo; Schuurman, I.; Broeder, D.
International audience; The terminology Community of Practice has long standardized data categories in the framework of ISO TC 37. ISO 12620:2009 specifies the data model and procedures for a Data Category Registry (DCR), which has been implemented by the Max Planck Institute for Psycholinguistics as the ISOcat DCR. The DCR has been used by not only ISO TC 37, but also by the CLARIN research infrastructure. This paper describes how the needs of these communities have started to diverge and th...
Shapiro-Mendoza, Carrie K; Camperlengo, Lena T; Kim, Shin Y; Covington, Theresa
This article describes a multistate population-based surveillance system for monitoring sudden unexpected infant deaths (SUIDs) known as the SUID Case Registry pilot program. The pilot program represents collaboration between the Centers for Disease Control and Prevention and the National Center for Child Death Review (NCCDR), which is funded by the Health Resources and Services Administration. The SUID Case Registry builds on existing child death review system activities and protocols. The objectives of the SUID Case Registry are to collect accurate and consistent population-based data about the circumstances and events associated with SUID cases, to improve the completeness and quality of SUID case investigations, and to use a decision-making algorithm with standardized definitions to categorize SUID cases. States who participate in the pilot program commit to review all SUID cases in their state by using their multidisciplinary state and local child death review teams. These teams request and review data from death scene investigators, medical examiners and coroners, law enforcement, social services, pediatric and obstetric providers, and public health per usual, but as part of the pilot program, supplement their SUID case reviews by discussing additional medical, environmental, and behavioral factors, and entering this data using the NCCDR Web-based Case Reporting System. This new surveillance system aims to improve knowledge of factors surrounding SUID events and improve investigation practices. The surveillance system will allow researchers and program planners to create prevention strategies and interventions, ultimately reducing SUIDs and injury-related infant deaths.
Samant, Yogindra; Parker, David; Wergeland, Ebba; Wannag, Axel
The Norwegian Labour Inspectorates (NLI's) Registry for Work-Related Diseases was established in 1920. Based on the principle of sentinel health events (SHE), its central purpose is to provide information to the NLI to enable workplace interventions and the prevention of hazardous exposures. Although physicians are required to report work-related diseases to the NLI, only 3% did so in 2006. There were 3392 cases of work-related diseases reported to the NLI by 561 physicians in 2006. Diseases of the ear (noise-induced hearing loss) comprised 59% (n=1987) of the cases, while 12% (n=398) of the cases were attributed to the diseases of the respiratory system and 7% (n =239) were diseases of the skin and subcutaneous tissue. Despite limitations, the registry continues to inform NLI's prevention strategies, supplements data concerning work-environment surveillance, and provides impetus for epidemiological studies.
Tonner, Chris; Schmajuk, Gabriela; Yazdany, Jinoos
This article reviews the evolution of quality measurement in rheumatology, highlighting new health-information technology infrastructure and standards that are enabling unprecedented innovation in this field. Spurred by landmark legislation that ties physician payment to value, the widespread use of electronic health records, and standards such as the Quality Data Model, quality measurement in rheumatology is rapidly evolving. Rather than relying on retrospective assessments of care gathered through administrative claims or manual chart abstraction, new electronic clinical quality measures (eCQMs) allow automated data capture from electronic health records. At the same time, qualified clinical data registries, like the American College of Rheumatology's Rheumatology Informatics System for Effectiveness registry, are enabling large-scale implementation of eCQMs across national electronic health record networks with real-time performance feedback to clinicians. Although successful examples of eCQM development and implementation in rheumatology and other fields exist, there also remain challenges, such as lack of health system data interoperability and problems with measure accuracy. Quality measurement and improvement is increasingly an essential component of rheumatology practice. Advances in health information technology are likely to continue to make implementation of eCQMs easier and measurement more clinically meaningful and accurate in coming years.
Prentice, Heather A; Paxton, Elizabeth W; Hunt, Jessica J; Grimsrud, Christopher D; Weiss, Jennifer M
Hip fracture registries offer an opportunity to identify and to monitor patients with rare conditions and outcomes, including hip fractures in pediatric patients. To report patient demographics and surgical outcomes of pediatric patients treated surgically for hip fractures in a large integrated health care system. Pediatric patients (fracture) with hip fractures were identified between 2009 and 2012 using our health care system's hip fracture registry. Patient characteristics, type of fracture, surgical treatment, and short-term complications. Among 39 patients identified, 31 (79.5%) were male, and the median age was 15 years old (interquartile range: 11-17 years). Most patients were Hispanic (n = 17, 43.6%) or white (n = 14, 35.9%). There were 8 patients (20.5%) with 15 comorbidities. Delbet Type IV (intertrochanteric) fractures were the most common fracture type (n = 22, 56.4%), and fixation method was equally distributed between intramedullary, screw and sideplate, and screws (n = 12, 30.8% for each). Most surgeries were performed by medium-volume surgeons (n = 22, 56.4%) at medium- and high-volume hospitals (n = 37, 94.9%). Three 90-day readmissions (7.7%), 1 infection (2.6%), 1 malunion (2.6%), and 1 revision (2.6%) were observed in this cohort during the study period. In our series using registry data, hip fractures younger than age 21 years were more common in boys and Hispanic patients. Intertrochanteric fractures (Delbet Type IV) were the most frequently observed type in our community-based hip fracture registry. Short-term complications were infrequent.
... & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL PROVISIONS SPECIAL PROGRAMS AND PROJECTS... requirements listed in § 403.806 as follows: (i) An exclusive card sponsor is deemed to meet the pharmacy network requirement in § 403.806(f)(3) if its pharmacy network is not limited to mail-order pharmacies and...
Hein, Laura C; Scharer, Kathleen M
This paper discusses the progression of developments in psychiatric-mental health nursing from the 1960s to the present. The 1960s were a time of shortage of psychiatric APRNs, with legislation expanding the availability of mental health services. We find ourselves in a similar time with 7 million new health insurance enrollees, because of the Affordable Care Act (ACA). The expansion of health insurance coverage comes at a time when some colleges of nursing are closing master's programs in psychiatric-mental health, in lieu of the DNP mandate from the American Association of Colleges of Nursing. Is history repeating itself? Copyright © 2014 Elsevier Inc. All rights reserved.
Andersen, M S; Christensen, E F; Jepsen, S B
BACKGROUND: Emergency Medical Dispatchers make decisions based on limited information. We aimed to investigate if adding demographic and hospitalization history information to the dispatch process improved precision. METHODS: This 30-day follow-up study evaluated time-critical emergencies...
Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude
anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT.......EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital...
Caplan, Louis R; Wityk, Robert J; Glass, Thomas A; Tapia, Jorge; Pazdera, Ladislav; Chang, Hui-Meng; Teal, Phillip; Dashe, John F; Chaves, Claudia J; Breen, Joan C; Vemmos, Kostas; Amarenco, Pierre; Tettenborn, Barbara; Leary, Megan; Estol, Conrad; Dewitt, L Dana; Pessin, Michael S
Among 407 New England Medical Center Posterior Circulation registry patients, 59% had strokes without transient ischemic attacks (TIAs), 24% had TIAs then strokes, and 16% had only TIAs. Embolism was the commonest stroke mechanism (40% of patients including 24% cardiac origin, 14% intraarterial, 2% cardiac and arterial sources). In 32% large artery occlusive lesions caused hemodynamic brain ischemia. Infarcts most often included the distal posterior circulation territory (rostral brainstem, superior cerebellum and occipital and temporal lobes); the proximal (medulla and posterior inferior cerebellum) and middle (pons and anterior inferior cerebellum) territories were equally involved. Severe occlusive lesions (>50% stenosis) involved more than one large artery in 148 patients; 134 had one artery site involved unilaterally or bilaterally. The commonest occlusive sites were: extracranial vertebral artery (52 patients, 15 bilateral) intracranial vertebral artery (40 patients, 12 bilateral), basilar artery (46 patients). Intraarterial embolism was the commonest mechanism of brain infarction in patients with vertebral artery occlusive disease. Thirty-day mortality was 3.6%. Embolic mechanism, distal territory location, and basilar artery occlusive disease carried the poorest prognosis. The best outcome was in patients who had multiple arterial occlusive sites; they had position-sensitive TIAs during months to years.
Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: email@example.com [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others
Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.
Giese, Henrik; Sauvigny, Thomas; Sakowitz, Oliver W; Bierschneider, Michael; Güresir, Erdem; Henker, Christian; Höhne, Julius; Lindner, Dirk; Mielke, Dorothee; Pannewitz, Robert; Rohde, Veit; Scholz, Martin; Schuss, Patrick; Regelsberger, Jan
Owing to increasing numbers of decompressive craniectomies in patients with malignant middle cerebral artery infarction, cranioplastic surgery becomes more relevant. However, the current literature mainly consists of retrospective single-centre (evidence class III) studies. This leads to a wide variability of technical approaches and clinical outcomes. To improve our knowledge about the key elements of cranioplasty, which may help optimising clinical treatment and long-term outcome, a prospective multicentre registry across Germany, Austria and Switzerland will be established. All patients undergoing cranioplastic surgery in participating centres will be invited to join the registry. Technical methods, materials, medical history, adverse events and clinical outcome measures, including modified Rankin scale and EQ-5D, will be assessed at several time points. Patients will be accessible to inclusion either at initial decompressive surgery or when cranioplasty is planned. Scheduled monitoring will be carried out at time of inclusion and subsequently at time of discharge, if any readmission is necessary, and at follow-up presentation. Cosmetic results and patient satisfaction will also be assessed. Collected data will be managed and statistically analysed by an independent biometric institute. The primary endpoint will be mortality, need for operative revision and neurological status at 3 months following cranioplasty. Ethics approval was obtained at all participating centres. The registry will provide reliable prospective evidence on surgical techniques, used materials, adverse events and functional outcome, to optimise patient treatment. We expect this study to give new insights in the treatment of skull defects and to provide a basis for future evidence-based therapy regarding cranioplastic surgery. This trial is indexed in the German Clinical Trials Register (DRKS-ID: DRKS00007931). The Universal Trial Number (UTN) is U1111-1168-7425. Published by the BMJ
Jarvik Jeffrey G
Full Text Available Abstract Background Back pain is one of the most important causes of functional limitation, disability, and utilization of health care resources for adults of all ages, but especially among older adults. Despite the high prevalence of back pain in this population, important questions remain unanswered regarding the comparative effectiveness of commonly used diagnostic tests and treatments in the elderly. The overall goal of the Back pain Outcomes using Longitudinal Data (BOLD project is to establish a rich, sustainable registry to describe the natural history and evaluate prospectively the effectiveness, safety, and cost-effectiveness of interventions for patients 65 and older with back pain. Methods/design BOLD is enrolling 5,000 patients ≥ 65 years old who present to a primary care physician with a new episode of back pain. We are recruiting study participants from three integrated health systems (Kaiser-Permanente Northern California, Henry Ford Health System in Detroit and Harvard Vanguard Medical Associates/ Harvard Pilgrim Health Care in Boston. Registry patients complete validated, standardized measures of pain, back pain-related disability, and health-related quality of life at enrollment and 3, 6 and 12 months later. We also have available for analysis the clinical and administrative data in the participating health systems’ electronic medical records. Using registry data, we will conduct an observational cohort study of early imaging compared to no early imaging among patients with new episodes of back pain. The aims are to: 1 identify predictors of early imaging and; 2 compare pain, functional outcomes, diagnostic testing and treatment utilization of patients who receive early imaging versus patients who do not receive early imaging. In terms of predictors, we will examine patient factors as well as physician factors. Discussion By establishing the BOLD registry, we are creating a resource that contains patient
Asher, Anthony L; McGirt, Matthew J; Glassman, Steven D; Groman, Rachel; Resnick, Dan K; Mehrlich, Melissa; Spivey, Elizabeth; McCormick, Paul
Clinical registries have emerged in the current resource-restricted environment of modern medicine as useful and logical mechanisms for providing health care stakeholders with high-quality data related to the safety, effectiveness, and value of specific interventions. Temporal and qualitative requirements for data acquisition in the context of clinical registries have rapidly expanded as clinicians and other stakeholders increasingly recognize the central importance of this information to the intelligent transformation of health care processes. Despite the potential of more robust clinical data collection efforts to advance the science of care, certain aspects of these newer systems, particularly the prospective, longitudinal acquisition of clinical data and direct patient contact, represent areas of structural overlap between emerging quality improvement efforts and traditional models of human subjects research. This overlap has profound implications for the design and implementation of modern clinical registries. In this paper, the authors describe the evolution of clinical registries as important tools for advancing the science of practice, and review the existing federal regulations that apply to these systems.
Jia, Qian; Zhao, Xingquan; Wang, Chunxue; Wang, Yilong; Yan, Yu; Li, Hao; Zhong, Liyong; Liu, Liping; Zheng, Huaguang; Zhou, Yong; Wang, Yongjun
Diabetes mellitus (DM) is an independent risk factor for ischemic stroke. However, controversy exists with regard to the impact of DM on prognosis after ischemic stroke in the Chinese population. We investigated the associations between DM and death, dependency, and stroke recurrence in patients after ischemic stroke onset in a nationwide, prospective registry, the China National Stroke Registry. The China National Stroke Registry consecutively recruited patients hospitalized for acute ischemic stroke in 2007 to 2008 and who were prospectively followed up for clinical and functional outcomes (death, dependency, and stroke recurrence) at 3 and 6 months after disease onset. Multivariable logistic regression was performed to analyze the association between DM and stroke outcomes after adjusting for potential confounding including age, sex, National Institutes of Health Stroke Scale score, glucose level at admission, hypertension, coronary heart disease, smoking, urinary tract infection, and other factors. DM was identified in 3483 (27.0%) of stroke patients. Compared with stroke patients without DM, patients with DM had a significantly higher incidence of death or dependency and of recurrent stroke at 3 and 6 months after stroke onset. DM was an independent risk factor for death or dependency (adjusted odds ratio=1.23; 95% confidence interval, 1.10 to 1.37) in patients with ischemic stroke at 6 months after onset. DM independently predicted poor outcomes in Chinese patients after acute ischemic stroke.
Mølbak, Kåre; Hansen, Niels Dalum; Valentiner-Branth, Palle
to the DMA of suspected severe adverse reactions.We selected controls without reports of adverse reactions from the Danish vaccination registry and matched by year of vaccination, age of vaccination, and municipality, and obtained from the Danish National Patient Registry and The National Health Insurance...... Service Register the history of health care usage two years prior to the first vaccine. We analysed the data by logistic regression while adjusting for the matching variables. Results The study included 316 cases who received first HPV vaccine between 2006 and 2014. Age range of cases was 11 to 52 years...... vaccination programme has declined. The aim of the present study was to determine health care-seeking prior to the first HPV vaccination among females who suspected adverse reactions to HPV vaccine. Methods In this registry-based case-control study, we included as cases vaccinated females with reports...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...
Berger, Rolf M. F.; Beghetti, Maurice; Humpl, Tilman; Raskob, Gary E.; Ivy, D. Dunbar; Jing, Zhi-Cheng; Bonnet, Damien; Schulze-Neick, Ingram; Barst, Robyn J.
Background Paediatric pulmonary hypertension, is an important cause of morbidity and mortality, and is insufficiently characterised in children. The Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension (TOPP) registry is a global, prospective study designed to provide information about
Ghadri, Jelena-R; Cammann, Victoria L; Templin, Christian
Takotsubo syndrome (TTS) was first described in Japan in 1990. The clinical presentation is similar to that of acute coronary syndrome (ACS). Cardiac enzymes are commonly elevated. A global initiative was launched and the InterTAK Registry was established to provide a systematic database. The major goals of the International Takotsubo Registry (InterTAK Registry) are to provide a comprehensive clinical characterization on natural history, treatment, and outcomes. We linked a biorepository to identify biomarkers for the diagnosis and prognosis and to investigate the genetic basis as well as disease-related factors. We focus on the rationale, objectives, design, and first results of the InterTAK Registry. Copyright © 2016 Elsevier Inc. All rights reserved.
Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...
U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
Roukis, Thomas S; Prissel, Mark A
Joint arthroplasty registry data are meaningful when evaluating the outcomes of total joint replacement, because they provide unbiased objective information regarding survivorship and incidence of use. Critical evaluation of the registry data information will benefit the surgeon, patient, and industry. However, the implementation and acceptance of registry data for total ankle replacement has lagged behind that of hip and knee implant arthroplasty. Currently, several countries have national joint arthroplasty registries, with only some procuring information for total ankle replacement. We performed an electronic search to identify publications and worldwide registry databanks with pertinent information specific to total ankle replacement to determine the type of prostheses used and usage trends over time. We identified worldwide registry data from 33 countries, with details pertinent to total ankle replacement identified in only 6 countries. The obtained information was arbitrarily stratified into 3 distinct periods: 2000 to 2006, 2007 to 2010, and 2011. Within these study periods, the data from 13 total ankle replacement systems involving 3,980 ankles were identified. The vast majority (97%) of the reported ankle replacements were 3-component, mobile-bearing, uncemented prostheses. Three usage trends were identified: initial robust embracement followed by abrupt disuse, minimal use, and initial embracement followed by sustained growth in implantation. Before the widespread acceptance of new total ankle replacements, the United States should scrutinize and learn from the international registry data and develop its own national joint registry that would include total ankle replacement. Caution against the adoption of newly released prostheses, especially those without readily available revision components, is recommended.
Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required.
Full Text Available Elizabeth L Eby,1 Kate Van Brunt,2 Cynthia Brusko,3 Bradley Curtis,4 Maureen J Lage5 1Global Patient Outcomes and Real World Evidence, Eli Lilly and Co., Indianapolis IN USA; 2Eli Lilly and Co., Windlesham, UK; 3Lilly USA, LLC, Indianapolis, IN, USA; 4Eli Lilly and Co., Indianapolis, IN, USA; 5HealthMetrics Outcomes Research, LLC, Bonita Springs, FL, USA Objective: To examine costs, resource utilization, adherence, and hypoglycemic events among various doses of U-100 insulin regimens among elderly patients (age ≥65 years diagnosed with diabetes.Methods: Truven Health Analytics Medicare databases from January 1, 2008 through December 31, 2011 were utilized. General linear models with a gamma distribution and log link were used to examine costs, while logistic and negative binomial regressions were used to examine resource utilization and hypoglycemic events. Analyses controlled for patient characteristics, pre-period comorbidities, general health, and use of antidiabetic medications as well as index dose of insulin.Results: All-cause inpatient, emergency room, and outpatients costs, as well as diabetes-related inpatient costs, were highest among individuals who were treated with an index dose of 10–100 units/day followed by >300 units/day, while drug costs and total costs generally increased as index dosage increased. Resource utilization generally followed the same pattern as costs, with number of office visits increasing as the dose increased and the highest hospital length of stay, number of hospitalizations, number of emergency room visits, and number of diabetes-related hospitalizations were generally highest among those in the lowest and highest index dose cohorts. Compared to patients who initiated with an index dose of 10–100 units/day, all other patients were significantly less likely to achieve an adherence threshold of 80% based upon index dose range, and while those with an index dose of >100–150 units/day were
Cuerda, C; Parón, L; Planas, M; Gómez Candela, C; Moreno, J M
The registries are databases including information about a treatment or a disease in a definite population. Concerning home artificial nutrition there are registries of patients in different European countries, USA and Japan, collecting data such as the prevalence, indication, follow-up and complications of these treatments. The Spanish group of Home Artificial Nutrition (HAN), NADYA, was established in 1992 with professionals devoted to the practise of artificial nutrition. Since then, one of its wills was the development of the Spanish registry of HAN. This is a voluntary registry accessible through the web page www.nadya-senpe.com. In 2005, this group decided to update the registry according to the Data Protection Law and including other improvements. Thank to the work of all the members of this group we have many data on the practise of HAN in our country. Since 1994, except the years 97-98, the annual registries of patients on home parenteral nutrition and home enteral nutrition have been published periodically, observing an increase in both, the number of patients and collaborating centres, presenting to us the actual practise of HAN in our country.
Cercenado, Emilia; Pachón, Jerónimo
The European Cubicin Outcomes Registry and Experience (EUCORE) is an ongoing, retrospective, European, post-marketing, non-comparative database of daptomycin use in patients that have received at least one daptomycin dose. The primary objective is to evaluate the clinical outcomes of patients treated with this drug. This article presents the analysis of patients included in Spanish institutions from January 2006 to March 2010. A total of 726 patients were included: 66% males, 48.6% aged more than 65 years old, and 70% with comorbidities. Daptomycin was administered in the outpatient setting in 20.3% of the patients. More than 50% of the patients received a dose of 6 mg/kg/day and in 80% daptomycin was administered as a rescue therapy. The median treatment duration was 14 days. The infections treated were bacteremia (32.51%), skin and soft tissue infections (31.4%), infectious endocarditis (14.33%), infections associated with prosthetic materials (10.9%), osteoarticular infections (6.1%), and others. Infections were caused by Staphylococcus aureus (40.5%; 14.4% methicilllin-resistant), coagulase-negative staphylococci (34.5%), enterococci (11.7%) and group viridans streptococci (2.9%). The overall rate of clinical success was 78.4% (81.5% when administered as first-line therapy and 77.6% when administered as rescue therapy). In patients with renal failure, the efficacy of daptomycin was lower. At the end of therapy, 8.7% of patients showed a decrease in creatinine clearance, and in 25 patients creatine kinase values were more than 10 times higher than normal values. Daptomycin is a safe and effective antimicrobial agent for the treatment of severe infections caused by Gram-positive bacteria.
Hasegawa, Takeshi; Nakai, Shigeru; Moriishi, Misaki; Ito, Yasuhiko; Itami, Noritomo; Masakane, Ikuto; Hanafusa, Norio; Taniguchi, Masatomo; Hamano, Takayuki; Shoji, Tetsuo; Yamagata, Kunihiro; Shinoda, Toshio; Kazama, Junichiro; Watanabe, Yuzo; Shigematsu, Takashi; Marubayashi, Seiji; Morita, Osamu; Wada, Atsushi; Hashimoto, Seiji; Suzuki, Kazuyuki; Kimata, Naoki; Wakai, Kenji; Fujii, Naohiko; Ogata, Satoshi; Tsuchida, Kenji; Nishi, Hiroshi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu; Nakamoto, Hidetomo
Since 2009, the peritoneal dialysis (PD) registry survey has been carried out as part of the annual nationwide survey conducted by the Statistical Survey Committee of the Japanese Society for Dialysis Therapy with the cooperation of the Japanese Society for Peritoneal Dialysis. In this report, the current status of PD patients is presented on the basis of the results of the survey conducted at the end of 2012. The subjects were PD patients who lived in Japan and participated in the 2012 survey. Descriptive analysis of various items was performed, which included the current status of the combined use of PD and another dialysis method such as hemodialysis (HD) or hemodiafiltration (HDF), the method of exchanging dialysate, the use of an automated peritoneal dialysis (APD) machine, and the rates of peritonitis and catheter exit-site infection. From the results of the facility survey in 2012, the number of PD patients was 9514, a decrease of 128 from 2011. Among the entire dialysis patient population, 3.1% were PD patients, a decrease of 0.1%. Among the studied patients, 347 had a peritoneal catheter and underwent peritoneal lavage, 175 were started on PD in 2012 but introduced to other blood purification methods in the same year, and 1932 underwent both PD and another dialysis method such as HD or HDF. The percentage of patients who underwent PD and another dialysis method increased with PD vintage: vintage of ≥2 years. The mean rate of peritonitis was 0.22 per patient per year. The mean rate of catheter exit-site infections was 0.36 per patient per year.
Rosenbach Margo L
Full Text Available Abstract Background Our aim was to compare access to effective care among elderly Medicare patients in a Staff Model and Group Model HMO and in Fee-for-Service (FFS care. Methods We used a retrospective cohort study design, using claims and automated medical record data to compare achievement on quality indicators for elderly Medicare recipients. Secondary data were collected from 1 HMO data sets and 2 Medicare claims files for the time period 1994–95. All subjects were Medicare enrollees in a defined area of New England: those enrolled in two divisions of a managed care plan with different physician payment arrangements: a staff model, and a group model; and the Medicare FFS population. We abstracted information on indicators covering several domains: preventive, diagnosis-specific, and chronic disease care. Results On the indicators we created and tested, access in the single managed care plan under study was comparable to or better than FFS care in the same geographic region. Percent of Medicare recipients with breast cancer screening was 36 percentage points higher in the staff model versus FFS (95% confidence interval 34–38 percentage points. Follow up after hospitalization for myocardial infarction was 20 percentage points higher in the group model than in FFS (95% confidence interval 14–26 percentage points. Conclusion According to indicators developed for use in both claims and automated medical record data, access to care for elderly Medicare beneficiaries in one large managed care organization was as good as or better than that in FFS care in the same geographic area.
Harris, Alex H S; Chen, Cheng; Mohr, Beth A; Adams, Rachel Sayko; Williams, Thomas V; Larson, Mary Jo
This study described rates and predictors of Army National Guard and Army Reserve members' enrollment in and utilization of Veteran Health Administration (VHA) services in the 365 days following demobilization from an index deployment. We also explored regional and VHA facility variation in serving eligible members in their catchment areas. The sample included 125,434 Army National Guard and 48,423 Army Reserve members who demobilized after a deployment ending between FY 2008 and FY 2011. Demographic, geographic, deployment, and Military Health System eligibility were derived from Defense Enrollment Eligibility Reporting System and "Contingency Tracking System" data. The VHA National Patient Care Databases were used to ascertain VHA utilization and status (e.g., enrollee, TRICARE). Logistic regression models were used to evaluate predictors of VHA utilization as an enrollee in the year following demobilization. Of the study members demobilizing during the observation period, 56.9% of Army National Guard members and 45.7% of Army Reserve members utilized VHA as an enrollee within 12 months. Demographic, regional, health coverage, and deployment-related factors were associated with VHA enrollment and utilization, and significant variation by VHA facility was found. These findings can be useful in the design of specific outreach efforts to improve linkage from the Military Health System to the VHA.
Noonan, Vanessa K; Thorogood, Nancy P; Joshi, Phalgun B; Fehlings, Michael G; Craven, B Catharine; Linassi, Gary; Fourney, Daryl R; Kwon, Brian K; Bailey, Christopher S; Tsai, Eve C; Drew, Brian M; Ahn, Henry; Tsui, Deborah; Dvorak, Marcel F
Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives.
Noonan, Vanessa K.; Thorogood, Nancy P.; Joshi, Phalgun B.; Fehlings, Michael G.; Craven, B. Catharine; Linassi, Gary; Fourney, Daryl R.; Kwon, Brian K.; Bailey, Christopher S.; Tsai, Eve C.; Drew, Brian M.; Ahn, Henry; Tsui, Deborah; Dvorak, Marcel F.
Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives. PMID:23968640
Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey
The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently
Jessica Call; Jennifer Hayes
There is increasing interest in tools for measuring and reducing emissions of carbon dioxide, a major greenhouse gas. Two tools that have been receiving a lot of attention include carbon markets and carbon registries. Carbon registries are established to record and track net carbon emission levels over time. These registries provide quantifiable and verifiable carbon...
Sugiyama, Hitoshi; Yokoyama, Hitoshi; Sato, Hiroshi; Saito, Takao; Kohda, Yukimasa; Nishi, Shinichi; Tsuruya, Kazuhiko; Kiyomoto, Hideyasu; Iida, Hiroyuki; Sasaki, Tamaki; Higuchi, Makoto; Hattori, Motoshi; Oka, Kazumasa; Kagami, Shoji; Kawamura, Tetsuya; Takeda, Tetsuro; Hataya, Hiroshi; Fukasawa, Yuichiro; Fukatsu, Atsushi; Morozumi, Kunio; Yoshikawa, Norishige; Shimizu, Akira; Kitamura, Hiroshi; Yuzawa, Yukio; Matsuo, Seiichi; Kiyohara, Yutaka; Joh, Kensuke; Nagata, Michio; Taguchi, Takashi; Makino, Hirofumi
The Japan Renal Biopsy Registry (J-RBR) was started in 2007 and the Japan Kidney Disease Registry (J-KDR) was then started in 2009 by the Committee for Standardization of Renal Pathological Diagnosis and the Committee for the Kidney Disease Registry of the Japanese Society of Nephrology. The purpose of this report is to describe and summarize the registered data from 2009 and 2010. For the J-KDR, data were collected from 4,016 cases, including 3,336 (83.1 %) by the J-RBR and 680 (16.9 %) other cases from 59 centers in 2009, and from 4,681 cases including 4,106 J-RBR cases (87.7 %) and 575 other cases (12.3 %) from 94 centers in 2010, including the affiliate hospitals. In the J-RBR, 3,165 native kidneys (94.9 %) and 171 renal grafts (5.1 %) and 3,869 native kidneys (94.2 %) and 237 renal grafts (5.8 %) were registered in 2009 and 2010, respectively. Patients younger than 20 years of age comprised 12.1 % of the registered cases, and those 65 years and over comprised 24.5 % of the cases with native kidneys in 2009 and 2010. The most common clinical diagnosis was chronic nephritic syndrome (55.4 % and 50.0 % in 2009 and 2010, respectively), followed by nephrotic syndrome (22.4 % and 27.0 %); the most frequent pathological diagnosis as classified by the pathogenesis was IgA nephropathy (31.6 % and 30.4 %), followed by primary glomerular diseases (except IgA nephropathy) (27.2 % and 28.1 %). Among the primary glomerular diseases (except IgA nephropathy) in the patients with nephrotic syndrome, membranous nephropathy was the most common histopathology in 2009 (40.3 %) and minor glomerular abnormalities (50.0 %) were the most common in 2010 in native kidneys in the J-RBR. Five new secondary and longitudinal research studies by the J-KDR were started in 2009 and one was started in 2010.
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.
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
Patarnello, Francesca; Recchia, Giuseppe
In the last decade regulators, payers and health care providers tried to react to three major problems in drug development and drug use in clinical practice: the pharmaceutical R&D productivity crisis, the immaturity of benefit-risk profile for several newly approved drugs and the overall impact on economic sustainability of reimbursing new high cost drugs in their systems. The potentiality of create a continuum between the evidence requirements relevant for registration, for reimbursement and for post authorization research is clear. All different parties involved, like regulators, HTA agencies, scientific communities and manufacturers, are working to improve the knowledge profile of new drugs in order to anticipate the patient access to innovation, limiting or preventing the clinical and economical risks deriving from an incomplete safety and effectiveness profile. The Italian example of "New Drugs AIFA Registries", with or without the application of risk sharing schemes (cost sharing, pay for performance, etc.), introduced a new process and increased the sensitivity on this topic. However this might probably represents only a partial answer to the problem of how to set up the governance of coverage with evidence, drug utilization monitoring, comparative effectiveness research, outcome research programs and may be how to link them to access, pricing and reimbursement. The step change in post authorization research could be to "integrate" different sources and stakeholders in a wider and continuous approach, in a well designed and inclusive "second generation" HTA approach, where all resources (competencies, data, funding) will concur to increase the evidence profile and reduce the risks, and where any "evidence generation approach" is really compliant with the standard and rules of best research practices.
Ruiz-Laiglesia, F-J; Sánchez-Marteles, M; Pérez-Calvo, J-I; Formiga, F; Bartolomé-Satué, J A; Armengou-Arxé, A; López-Quirós, R; Pérez-Silvestre, J; Serrado-Iglesias, A; Montero-Pérez-Barquero, M
We sought to identify the comorbidities associated with heart failure (HF) in a non-selected cohort of patients, and its influence on mortality and rehospitalization. Data were obtained from the 'Registro de Insuficiencia Cardiaca' (RICA) of the Spanish Society of Internal Medicine. The registry includes patients prospectively admitted in Internal Medicine units for acute HF. Variables included in Charlson Index (ChI) were collected and analysed according to age, gender, left ventricular ejection fraction (LVEF) and Barthel Index. The primary end point of study was the likelihood of rehospitalization and death for any cause during the year after discharge. We included 2051 patients, mean age 78 and 53% females. LVEF was ⩾ 50% in 59.1% of the cohort. There was a high degree of dependency as measured by Barthel Index (14.8 % had an index ≤ 60). Mean ChI was 2.91 (SD ± 2.4). The most frequent comorbidities included in ChI were diabetes mellitus (44.3%), chronic renal impairment (30.8%) and chronic obstructive pulmonary disease (COPD) (27.4%). Age, myocardial infarction, peripheral artery disease, dementia, COPD, chronic renal impairment and diabetes with target-organ damage were all identified as independent prognostic factors for the combined end point of rehospitalization and death at 1 year. However, if multivariate analysis was done including ChI, only this remained as an independent prognostic factor for the combined end point (P < 0.001). HF is a comorbid condition. ChI is a simple and feasible tool for estimating the burden of comorbidities in such population. We believe that a holistic approach to HF would improve prognosis and the relief the pressure exerted on public health services. © The Author 2014. Published by Oxford University Press on behalf of the Association of Physicians. All rights reserved. For Permissions, please email: firstname.lastname@example.org.
Planning the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a Collaborative Pan-Stakeholder Critical Path Registry Model: a Cardiac Safety Research Consortium "Incubator" Think Tank.
Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Packer, Douglas L; Ellenbogen, Kenneth A; Hammill, Stephen C; Natale, Andrea; Page, Richard L; Prystowsky, Eric; Jackman, Warren M; Stevenson, William G; Waldo, Albert L; Wilber, David; Kowey, Peter; Yaross, Marcia S; Mark, Daniel B; Reiffel, James; Finkle, John K; Marinac-Dabic, Danica; Pinnow, Ellen; Sager, Phillip; Sedrakyan, Art; Canos, Daniel; Gross, Thomas; Berliner, Elise; Krucoff, Mitchell W
Atrial fibrillation (AF) is a major public health problem in the United States that is associated with increased mortality and morbidity. Of the therapeutic modalities available to treat AF, the use of percutaneous catheter ablation of AF is expanding rapidly. Randomized clinical trials examining the efficacy and safety of AF ablation are currently underway; however, such trials can only partially determine the safety and durability of the effect of the procedure in routine clinical practice, in more complex patients, and over a broader range of techniques and operator experience. These limitations of randomized trials of AF ablation, particularly with regard to safety issues, could be addressed using a synergistically structured national registry, which is the intention of the SAFARI. To facilitate discussions about objectives, challenges, and steps for such a registry, the Cardiac Safety Research Consortium and the Duke Clinical Research Institute, Durham, NC, in collaboration with the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, organized a Think Tank meeting of experts in the field. Other participants included the National Heart, Lung and Blood Institute, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, the Society of Thoracic Surgeons, the AdvaMed AF working group, and additional industry representatives. The meeting took place on April 27 to 28, 2009, at the US Food and Drug Administration headquarters in Silver Spring, MD. This article summarizes the issues and directions presented and discussed at the meeting. Copyright 2010 Mosby, Inc. All rights reserved.
Full Text Available I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development with our major shareholder OCLC, and sometimes 3rd parties such as LIBER. My main purpose today is to provide a descriptive paper to inform LIBER members about the OCLC Digital Registry and to outline the possible role for LIBER and its membership in a model for European participation. My presentation will be in three phases: the need for a registry, a description of the Registry and finally, and perhaps most importantly, to outline opportunities for LIBER and its members in establishing a model for European contribution. We are all familiar with the concept of a registry through our participation in union catalogues and perhaps also from our experience with microfilms through the European Register of Microform Masters (EROMM hosted by our friends in Göttingen.
Korngut, L; Genge, A; Johnston, M; Benstead, T; Bourque, P; Briemberg, H; Casey, A; D'Amour, M; Dupré, N; Figlewicz, D; Hader, W; Johnston, W; Kalra, S; Melanson, M; O'Connell, C; Rouleau, G; Shoesmith, C; Wee, J; Zinman, L
Amyotrophic lateral sclerosis (ALS) is a devastating cause of progressive weakness, respiratory failure and death. To date there is no effective therapy to meaningfully extend survival but continuously emerging targets and putative treatments are studied in clinical trials. Canadian epidemiological data on ALS is scarce and the socioeconomic impact of ALS on Canadian society is unclear. The Canadian Neuromuscular Disease Registry (CNDR) is a national clinic-based registry of patients with neuromuscular diseases with the goal of facilitating the design and execution of clinical research. We conducted a national stakeholder survey to assess interest for a Canadian ALS registry and an assessment of expected case ascertainment. A dataset derivation meeting was held to establish the registry medical dataset. We report the results of the national stakeholder survey, case ascertainment assessment, and the derived dataset that have resulted in the current implementation of a Canadian registry of patients with ALS. The development of this long sought-after resource is a significant step forward for the Canadian ALS patient and research communities that will result in more efficient clinical trial recruitment and advancements in our understanding of ALS in Canada.
Weinstein, Adam; Beckrich, Amy; Singer, Dale
It is important for providers and practices to begin working with registry level data. Submitting data to a qualified clinical data registry currently satisfies Meaningful Use Stage II menu set items. In the future, with the rollout of MIPS and the increasing focus on sharing risk, registry data will be used as a benchmark for both publicly-reported performance (the physician compare program will be linked to provider-level QCDR data) and modifications to reimbursement. It is important to remember that PQRS data is the basis for the value based modifier now and MIPS- related quality data after 2018. The RPA has launched and is evolving a unique and versatile nephrology-specific data collection and analytics tool. In collaboration with the American Society of Diagnostic and Interventional Nephrology, vascular access measures will be added to the registry for 2016. The registry and the analytics platform is a tier of software operating above your practice management system and EHR and, if data can be obtained, it can span all the locations in which nephrologists provide care.
... Balance Control and Motor Strategy in Children with Down syndrome Dr. Jerry Wu at Georgia State University is conducting ... Shriver National Institute of Child Health and Human Development (NICHD) National Cancer Institute ( ...
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
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.
Thompson, Kimberly M; Logan, Grace E
Despite high vaccine coverage in the United States in general, and in the State of Florida specifically, some children miss scheduled vaccines due to health system failures or vaccine refusal by their parents. Recent experiences with outbreaks in the United States suggest that geographic clustering of un(der)vaccinated populations represent a threat to the elimination status of some vaccine-preventable diseases. Immunization registries continue to expand and play an important role in efforts to track vaccine coverage and use. Using nearly 700,000 de-identified immunization records from the Florida Department of Health immunization information system (Florida SHOTS™) for children born during 2003-2014, we explored heterogeneity and potential clustering of un(der)vaccinated children in six counties in central Florida-Brevard, Lake, Orange, Oseola, Polk, and Seminole-that represent a high-risk area for importation due to family tourist attractions in the area. By zip code, we mapped the population density, the percent of children with religious exemptions, the percent of children on track or overdue for each vaccine series without and with exemptions, and the numbers of children with no recorded dose of each vaccine. Overall, we found some heterogeneity in coverage among the counties and zip codes, but relatively consistent and high coverage. We found that some children with an exemption in the system received the vaccines we analyzed, but exemption represents a clear risk factor for un(der)immunization. We identified many challenges associated with using immunization registry data for spatial analysis and potential opportunities to improve registries to better support future analyses.
Guadalupe Delgado-Sánchez; Lourdes García-García; Martín Castellanos-Joya; Pablo Cruz-Hervert; Leticia Ferreyra-Reyes; Elizabeth Ferreira-Guerrero; Andrés Hernández; Victor Manuel Ortega-Baeza; Rogelio Montero-Campos; José Antonio Sulca; Ma de Lourdes Martínez-Olivares; Norma Mongua-Rodríguez; Renata Baez-Saldaña; Jesús Felipe González-Roldán; Hugo López-Gatell
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 individu...
Full Text Available Thalassaemia and other haemoglobinopathies constitute an important health problem in Mediterranean countries, placing a tremendous emotional, psychological, and economic burden on their National Health systems. The development of new chelators in the most recent years had a major impact on the treatment of thalassaemia and on the quality of life of thalassaemic patients. A new initiative was promoted by the Italian Ministry of Health, establishing a Registry for thalassaemic patients to serve as a tool for the development of cost-effective diagnostic and therapeutic approaches and for the definition of guidelines supporting the most appropriate management of the iron-chelating therapy and a correct use of the available iron-chelating agents. This study represents the analysis of the preliminary data collected for the evaluation of current status of the iron chelation practice in the Italian thalassaemic population and describes how therapeutic interventions can widely differ in the different patients' age groups.
Ceci, Adriana; Mangiarini, Laura; Felisi, Mariagrazia; Bartoloni, Franco; Ciancio, Angela; Capra, Marcello; D'Ascola, Domenico; Cianciulli, Paolo; Filosa, Aldo
Thalassaemia and other haemoglobinopathies constitute an important health problem in Mediterranean countries, placing a tremendous emotional, psychological, and economic burden on their National Health systems. The development of new chelators in the most recent years had a major impact on the treatment of thalassaemia and on the quality of life of thalassaemic patients. A new initiative was promoted by the Italian Ministry of Health, establishing a Registry for thalassaemic patients to serve as a tool for the development of cost-effective diagnostic and therapeutic approaches and for the definition of guidelines supporting the most appropriate management of the iron-chelating therapy and a correct use of the available iron-chelating agents. This study represents the analysis of the preliminary data collected for the evaluation of current status of the iron chelation practice in the Italian thalassaemic population and describes how therapeutic interventions can widely differ in the different patients' age groups. PMID:21738864
Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician
Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.
Rasmussen, Jeppe V; Brorson, Stig; Hallan, Geir
Background The Nordic Arthroplasty Register Association was initiated in 2007, and several papers about hip and knee arthroplasty have been published. Inspired by this, we aimed to examine the feasibility of merging data from the Nordic national shoulder arthroplasty registries by defining a common...... minimal data set. Methods A group of surgeons met in 2014 to discuss the feasibility of merging data from the national shoulder registries in Denmark, Norway, and Sweden. Differences in organization, definitions, variables, and outcome measures were discussed. A common minimal data set was defined...... as a set of variables containing only data that all registries could deliver and where consensus according to definition of the variables could be made. Results We agreed on a data set containing patient-related data (age, gender, and diagnosis), operative data (date, arthroplasty type and brand), and data...
Cervantes-Salazar, Jorge; Calderón-Colmenero, Juan; Ramírez-Marroquín, Samuel; Palacios-Macedo, Alexis; Bolio-Cerdán, Alejandro; Vizcaíno Alarcón, Alfredo; Curi-Curi, Pedro; de la Llata, Manuel; Erdmenger-Orellana, Julio; González, Julieta; García-Soriano, Federico; Calderón, Alejandro; Casillas, Luis; Villanueva, Filiberto; Sánchez-Ramírez, Roberto; Osnaya, Héctor; Necoechea, Juan Carlos; Alva-Espinoza, Carlos; Prado-Villegas, Guillermo
Current world tendency is the detection of health problems in order to offer solution alternatives by means of the development of computarized data bases. To present the results of a computerized data base developed for the registry of pediatric cardiac surgery with the support of Asociación Mexicana de Especialistas en Cardiopatías Congénitas (AMECC, A.C.). A one-year analysis (from August 1, 2011 to July 31, 2012) of a computerized data base was performed with the support of AMECC and the participation of the most important Mexican institutions for pediatric surgical heart disease health care, particularly for the uninsured population. There were 7 health institutions voluntarily incorporated to the national data base registry, and in the first year of observation, 943 surgical procedures in 880 patients and 7% re-operations (n = 63), were reported. Patients up to one-year old accounted for 38%. The most frequent types of operated congenital heart diseases were: patent ductus arteriosus (n = 96), ventricular septal defect (n = 86), tetralogy of Fallot (n = 72), atrial septal defect (n = 68), and aortic coarctation (n = 54). Elective procedures were 90%, and 62% of them were performed with the use of cardiopulmonary bypass. Overall mortality was 7.5% with the following RACHS-1 score risk distribution: 1 (n = 4.2%), 2 (n = 19.6%), 3 (n = 22.8%), 4 (n = 12.19%), 5 (n = 1.25%), 6 (n = 6.44%) and not classifiable (n = 2.9%). Although this analysis gives a representative vision of the cardiovascular surgical health care for the uninsured national pediatric population, the incorporation of other health institutions to this data base may lead us to have a most realistic overview in relation to the surgical cardiovascular health care for the up to 18 year-old population.
Burton, Tanya; Le Nestour, Elisabeth; Neary, Maureen; Ludlam, William H.
Purpose Incidence and prevalence estimates of acromegaly in the United States (US) are limited. Most existing reports are based on European data sources. The objective of this study was to estimate the annual incidence and prevalence of acromegaly in a large US managed care population, overall and stratified by age, sex, and geographic region, using data from 2008 to 2012. Methods Using administrative claims data, commercial health plan enrollees were identified with acromegaly if they had tw...
Langseth, Hilde; Luostarinen, Tapio; Bray, Freddie; Dillner, Joakim
The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.
D’Agnolo, Hedwig MA; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner
The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298
Juan Pablo García-González
Full Text Available One of the promises of adopting a service-oriented approach in organizations is the potential cost savings that result from the reuse of existing services. A service registry is one of the fundamental pieces of service oriented architecture (SOA for achieving reuse. It refers to a place in which service providers can impart information about their offered services and potential clients can search for services. In this article, we provide advice for implementing an enterprise-wide service registry. We also discuss open issues in industry and academia that affect the management of service- repository information.
Demleitner, Markus; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos
Registries provide a mechanism with which VO applications can discover and select resources - first and foremost data and services - that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.
D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph
The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well.
Gilmore, Amanda S; Helderman, J Harold; Ricci, Jean-Francois; Ryskina, Kira L; Feng, Sandy; Kang, Ning; Legorreta, Antonio P
In the United States, data on transplanted and waitlisted patients collected by the Organ Procurement and Transplantation Network (OPTN) have been widely used in transplantation research. Administrative claims data, collected by health plans for reimbursement purposes, are also commonly used in health-services research. This study linked OPTN and private payer claims data to assess the relationship between data elements common to both sources. All transplanted or waitlisted patients in the registry were considered for inclusion. A multistep match algorithm was employed to link OPTN and payer data from years 1995 to 2004. Variables common to both datasets that contained relevant information for similar time periods were compared. A total of 21,419 solid organ transplant recipients and 8808 waitlist patients were included in the final linked database. Organ type and demographic variable distributions in the linked dataset were similar to the overall OPTN database. Using claims as the reference group, sensitivity and specificity values were on average 0.72 and 0.69, respectively, and were highest for the indicators of immunosuppression use at discharge and follow-up. This comparison of payer data with information reported by transplant centers to the OPTN provides important insight into the value of both data sources. Using administrative claims to augment the registry data with utilization and cost information will be useful for evaluation of both economic and clinical endpoints in solid organ transplantation.
Full Text Available Abstract Background The purpose of this study was to use insurance claims and tumor registry data to examine determinants of breast conserving surgery (BCS in women with early stage breast cancer. Methods Breast cancer cases registered in the Hawaii Tumor Registry (HTR from 1995 to 1998 were linked with insurance claims from a local health plan. We identified 722 breast cancer cases with stage I and II disease. Surgical treatment patterns and comorbidities were identified using diagnostic and procedural codes in the claims data. The HTR database provided information on demographics and disease characteristics. We used logistic regression to assess determinants of BCS vs. mastectomy. Results The linked data set represented 32.8% of all early stage breast cancer cases recorded in the HTR during the study period. Due to the nature of the health plan, 79% of the cases were younger than 65 years. Women with early stage breast cancer living on Oahu were 70% more likely to receive BCS than women living on the outer islands. In the univariate analysis, older age at diagnosis, lower tumor stage, smaller tumor size, and well-differentiated tumor grade were related to receiving BCS. Ethnicity, comorbidity count, menopausal and marital status were not associated with treatment type. Conclusions In addition to developing solutions that facilitate access to radiation facilities for breast cancer patients residing in remote locations, future qualitative research may help to elucidate how women and oncologists choose between BCS and mastectomy.
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.
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
Boyle, B.; McConkey, R.; Garne, E.; Loane, M.; Addor, M. C.; Bakker, M. K.; Boyd, P. A.; Gatt, M.; Greenlees, R.; Haeusler, M.; Klungsoyr, K.; Latos-Bielenska, A.; Lelong, N.; McDonnell, R.; Metneki, J.; Mullaney, C.; Nelen, V.; O'Mahony, M.; Pierini, A.; Rankin, J.; Rissmann, A.; Tucker, D.; Wellesley, D.; Dolk, H.
Objective To assess the public health consequences of the rise in multiple births with respect to congenital anomalies. Design Descriptive epidemiological analysis of data from population-based congenital anomaly registries. Setting Fourteen European countries. Population A total of 5.4 million
Boyle, B.; McConkey, R.; Garne, E.; Loane, M.; Addor, M. C.; Bakker, M. K.; Boyd, P. A.; Gatt, M.; Greenlees, R.; Haeusler, M.; Klungsoyr, K.; Latos-Bielenska, A.; Lelong, N.; McDonnell, R.; Metneki, J.; Mullaney, C.; Nelen, V.; O'Mahony, M.; Pierini, A.; Rankin, J.; Rissmann, A.; Tucker, D.; Wellesley, D.; Dolk, H.
Objective To assess the public health consequences of the rise in multiple births with respect to congenital anomalies. Design Descriptive epidemiological analysis of data from population-based congenital anomaly registries. Setting Fourteen European countries. Population A total of 5.4 million birt
Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z
The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD
Nielsen, Signe Smith; Krasnik, Allan; Rosano, Aldo
Background Cross-national comparable data on migrants’ use of healthcare services are important to address problems in access to healthcare; to identify high risk groups for prevention efforts; and to evaluate healthcare systems comparatively. Some of the main obstacles limiting analyses of health...... utilization, and the diversity in the definition of migrant status hampers cross-national comparisons and calls for an urgent establishment of registries, expansion of the existing registry information, and adoption of a common, generally acceptable definition and identification method of migrants across...
Full Text Available Abstract Background Cross-national comparable data on migrants' use of healthcare services are important to address problems in access to healthcare; to identify high risk groups for prevention efforts; and to evaluate healthcare systems comparatively. Some of the main obstacles limiting analyses of health care utilization are lack of sufficient coverage and availability of reliable and valid healthcare data which includes information allowing for identification of migrants. The objective of this paper was to reveal which registry data on healthcare utilization were available in the EU countries in which migrants can be identified; and to determine to what extent data were comparable between the EU countries. Methods A questionnaire survey on availability of healthcare utilization registries in which migrants can be identified was carried out among all national statistic agencies and other relevant national health authorities in the 27 EU countries in 2008-9 as part of the Migrant and Ethnic Minority Health Observatory-project (MEHO. The information received was compared with information from a general survey on availability of survey and registry data on migrants conducted by Agency of Public Health, Lazio Region, Italy within the MEHO-project; thus, the information on registries was double-checked to assure accuracy and verification. Results Available registry data on healthcare utilization which allow for identification on migrants on a national/regional basis were only reported in 11 EU countries: Austria, Belgium, Denmark, Finland, Greece, Italy, Luxembourg, the Netherlands, Poland, Slovenia, and Sweden. Data on hospital care, including surgical procedures, were most frequently available whereas only few countries had data on care outside the hospital. Regarding identification of migrants, five countries reported having information on both citizenship and country of birth, one reported availability of information on country of birth, and
... Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and Hazardous Materials Safety... registry of pipeline and liquefied natural gas operators. FOR FURTHER INFORMATION CONTACT: Jamerson Pender... 72878), titled: ``Pipeline Safety: Updates to Pipeline and Liquefied Natural Gas Reporting...
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment.... 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire,'' in...
de By, Theo M M H; Mohacsi, Paul; Gummert, Jan
other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry...
Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas
The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179
Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas
The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application.
Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P
Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem.
... before EOIR upon completing the registration process. While administrative suspension, on its own, is not... addresses electronically by completing a two-step process. First, registrants must log in to their eRegistry... additional instructions regarding the registration process. DATES: Attorneys and accredited representatives...
Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.
Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric
The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and u...
Weisgerber, David W.
Describes the history, scope, and applications of the Chemical Abstracts Service Chemical Registry System, a computerized database that uniquely identifies chemical substances on the basis of their molecular structures. Explains searching the system is and discusses its use as an international resource. (66 references) (Author/LRW)
Page, William F
The National Academy of Sciences-National Research Council (NAS-NRC) Twin Registry is one of the oldest, national population-based twin registries in the United States. It consists of 15,924 white male twin pairs born in the years 1917 to 1927 (inclusive), both of whom served in the armed forces, mostly during World War II. This article updates activity in this registry since the earlier 2002 article in Twin Research. The results of clinically based studies on dementia, Parkinson's disease, age-related macular degeneration, and primary osteoarthritis were published, as well as articles based on previously collected questionnaire data on chronic fatigue syndrome, functional limitations, and healthy aging. In addition, risk factor studies are being planned to merge clinical data with earlier collected risk factor data from questionnaires. Examination data from the subset of National Heart, Lung, and Blood Institute (NHLBI) twins resulted in a number of articles, including the relationship of endogenous sex hormones to coronary heart disease and morphological changes in aging brain structures. The NEO Five-Factor Personality Inventory (a paper-and-pencil self-administered questionnaire) has been fielded for the first time. A push to consolidate the various data holdings of the registry is being made.
Praveen, Pradeep A.; Madhu, Sri Venkata; Mohan, Viswanathan; Das, Siddhartha; Kakati, Sanjeeb; Shah, Nalini; Chaddha, Manoj; Bhadada, Sanjay Kumar; Das, Ashok Kumar; Shukla, Deepak Kumar; Kaur, Tanvir; Tandon, Nikhil
Background: With the aim of addressing the relative scarcity of information on youth-onset diabetes in India, the Indian Council of Medical Research (ICMR) decided to establish the Registry of People with Diabetes with Young Age at Onset (YDR) in 2006. The major objectives of YDR are to generate information on disease pattern or types of youth-onset diabetes including their geographical variations within India and to estimate the burden of diabetes complications. Methods: YDR is an observational multicenter clinic based registry enlisting physician diagnosed diabetes in individuals below 25 years of age. Diabetes was classified using symptom based clinical criteria. YDR data collection is coordinated through regional collaborating centers and their interacting reporting centers across India. A baseline and an annual follow-up proformas are used to obtain information on sociodemographic details, clinical profile, and anthropometric and laboratory measurements of the patients. Results: In phase 1, the registry has enrolled 5546 patients, in which type 1 diabetes mellitus (T1DM) was the most prevalent (63.9%), followed by youth-onset type 2 diabetes mellitus (T2DM) (25.3%). Conclusion: This registry provides a unique opportunity to study the natural history of youth-onset diabetes in India. PMID:27179010
Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.
Dimitrova, Nadya; Parkin, Donald Maxwell
Reporting of neoplasms in Bulgaria has been compulsory since a directive from the Ministry of Health in 1951. The quality of cancer registry data has been estimated rather infrequently in past years. We aimed to provide a comprehensive evaluation of the quality of the data at the Bulgarian National Cancer Registry (BNCR). Quantitative and semi-quantitative methods were applied for cancers diagnosed during the whole period 1993-2010, and also for cases diagnosed in 2006-2010. The methods used include historic data methods, mortality-to-incidence ratios (M:I), capture-recapture and death-certificate methods, proportions of morphologically verified cases (MV%), death-certificate-only cases (DCO%), and cases with missing information (primary site unknown, PSU%; stage unknown, SU%). The BNCR coding and classification systems follow international standards. The overall completeness was estimated at 92.6-94.7% for the period 2006-2010, with variations between cancer sites (86.7-98.5%). During the period 1993-2010, M:I decreased to 0.5 for males and 0.4 for females, MV increased to 87.4%, DCO and SU decreased to 4.8% and 18.8%, respectively, and PSU remained at the same level of about 4% for both sexes together. Sub-analysis revealed differences by site, sex and age groups. The comparison with other registries from the region showed similar incidence rates and directions of trends: M:I, MV% and DCO% that were not significantly different. The underreporting in 2008 and 2009 due to timely publication was estimated at an overall 0.8% and 0.5%, respectively. The present review showed that the BNCR yields internationally comparable data that are reasonably accurate, timely, and close to complete, especially in recent years. This is a prerequisite for the BNCR to expand its role to more areas of cancer control.
Full Text Available Rune Erichsen1, Timothy L Lash1, Stephen J Hamilton-Dutoit2, Beth Bjerregaard3, Mogens Vyberg2,4, Lars Pedersen11Department of Clinical Epidemiology, 2Institute of Pathology, 4Aalborg Hospital, Aarhus University Hospital, Aarhus, Denmark; 3Department of Pathology and the Pathology Data Bank, Herlev University Hospital, Herlev, DenmarkAbstract: Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective epidemiological studies to be carried out. Such studies are of significant importance, for example in the search for novel prognostic and predictive biomarkers in the era of personalized medicine. Denmark has a wealth of highly-regarded population-based registries that are ideally suited to conduct this type of epidemiological research. We describe two recent additions to these databases: the Danish National Pathology Registry (DNPR and its underlying national online registration database, the Danish Pathology Data Bank (DPDB. The DNPR and the DPDB contain detailed nationwide records of all pathology specimens analyzed in Denmark since 1997, and an incomplete but nonetheless valuable record of specimens from some pathology departments dating back to the 1970s. The data are of high quality and completeness and are sufficient to allow precise and efficient localization of the specimens. We describe the relatively uncomplicated procedures required to use these pathology databases in clinical research and to gain access to the archived specimens.Keywords: cohort profile, epidemiology, paraffin blocks, pathology
Benedetto, Giovanni; Prima, Alessia Di; Sciacca, Salvatore; Grosso, Giuseppe
We described the design of a web-based application (the Software Integrated Cancer Registry-SWInCaRe) used to administer data in a cancer registry and tested its validity and usability. A sample of 11,680 records was considered to compare the manual and automatic procedures. Sensibility and specificity, the Health IT Usability Evaluation Scale, and a cost-efficiency analysis were tested. Several data sources were used to build data packages through text-mining and record linkage algorithms. The automatic procedure showed small yet measurable improvements in both data linkage process and cancer cases estimation. Users perceived the application as useful to improve the time of coding and difficulty of the process: both time and cost-analysis were in favor of the automatic procedure. The web-based application resulted in a useful tool for the cancer registry, but some improvements are necessary to overcome limitations observed and to further automatize the process.
Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey
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
Dewdney, Summer B; Lachance, Jason
Despite many perceived advances in treatment over the past few decades, cancer continues to present a significant health burden, particularly to the aging US population. Forces including shrinking funding mechanisms, cost and quality concerns, as well as disappointing clinical outcomes have driven a surge of recent efforts into utilizing the technological innovation that has permeated other industries by leveraging large and complex data sets, so called "big data." In this review, we will review some of the history of oncology data collection, including the earliest data registries, as well as explore the future directions of this new brand of research while highlighting some of the more recent and promising efforts to harness the power of the electronic health record and the multitude of data co-located there, in an effort to improve individualized cancer-related outcomes in rapid real time.
Cal-Purriños, Natalia; Arribas-Leal, Jose M; Carnero-Alcazar, Manuel; Gutierrez-Diez, Jose F; Cuenca-Castillo, Jose J
Introduction Rapid deployment valves (RDV) represent a newly introduced approach to aortic valve replacement which facilitates surgical implantation and minimally invasive techniques, shortens surgical times and shows excellent haemodynamic performance. However, evidence on their safety, efficacy and potential complications is mostly fitted with small-volume and retrospective studies. Moreover, no current guidelines exist. To improve our knowledge on this technology, The Rapid Deployment Aortic Replacement (RADAR) Registry will be established across Spain with the aim of assessing RDV outcomes in the real-world setting. Methods and analysis The RADAR Registry is designed as a product registry that would provide information on its use and outcomes in clinical practice. This multicentre, prospective, national effort will initially involve 4 centres in Spain. Any patient undergoing cardiac surgery for aortic valve replacement and receiving an RDV as an isolated operation or in combination with other cardiac procedures may be included. Participation is voluntary. Data collection is equal to information obtained during standard care and is prospectively entered by the participating physicians perioperatively and during subsequent follow-up visits. The primary outcome assessed is in-hospital and up to 5 years of follow-up, prosthetic valve functioning and clinical status. Secondary outcomes are to perform subgroup analysis, to compare outcomes with other existing approaches and to develop future clinical guidelines. The follow-up assessments are timed with routine clinical appointments. Dissociated data will be extracted and collectively analysed. Initial target sample size for the registry is 500 participants entered with complete follow-up information. Different substudies will be implemented within the registry to investigate specific populations undergoing aortic valve replacement. Ethics and dissemination The protocol is approved by all local institutional ethics
Full Text Available Objective: To describe the results of the home enteral nutrition (HEN registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%. Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1% during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route.
Kvistholm Jensen, Anne; Simonsen, Jacob; Ethelberg, Steen
BACKGROUND: Recent studies suggest that proton pump inhibitors (PPIs) may increase the risk for listeriosis. We aimed to investigate a potential association in cases of non-pregnancy associated listeriosis, using registry data. METHODS: We conducted a population-based case-control study using...... Danish health registries. Case-patients (n=721) were defined as patients ≥45 years notified with listeriosis, July 1994 to December 2012. We selected 34,800 control-subjects by risk-set sampling. Controls were individually matched for age, sex, municipality and time. Person data on use of PPI and other...... conditional logistic regression, matched odds ratios (ORs) adjusted for CMI and confounders were estimated. RESULTS: The adjusted OR with current use of PPIs for development of listeriosis was 2.81 (95% confidence interval [CI], 2.14-3.69). PPI usage up to 90 days before the index date remained statistically...
...: Implementation of the National Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and... registry of pipeline and liquefied natural gas operators. This notice provides updates to the information... and liquefied natural gas (LNG) operators. New operators use the national registry to obtain...
Siegler, James E; Boehme, Amelia K; Dorsey, Adrianne M; Monlezun, Dominique J; George, Alex J; Shaban, Amir; Bockholt, H Jeremy; Albright, Karen C; Martin-Schild, Sheryl
The use of a medical data registry allows institutions to effectively manage information for many different investigations related to the registry, as well as evaluate patient's trends over time, with the ultimate goal of recognizing trends that may improve outcomes in a particular patient population. The purpose of this article is to illustrate our experience with a stroke patient registry at a comprehensive stroke center and highlight advantages, disadvantages, and lessons learned in the process of designing, implementing, and maintaining a stroke registry. We detail the process of stroke registry methodology, common data element (CDE) definitions, the generation of manuscripts from a registry, and the limitations. The largest advantage of a registry is the ability to prospectively add patients, while allowing investigators to go back and collect information retrospectively if needed. The continuous addition of new patients increases the sample size of studies from year to year, and it also allows reflection on clinical practices from previous years and the ability to investigate trends in patient management over time. The greatest limitation in this registry pertains to our single-entry technique where multiple sites of data entry and transfer may generate errors within the registry. To reduce the potential for errors and maximize the accuracy and efficiency of the registry, we invest significant time in training competent registry users and project leaders. With effective training and transition of leadership positions, which are continuous and evolving processes, we have attempted to optimize our clinical research registry for knowledge gain and quality improvement at our center.
Hollak, C.E.M.; Aerts, J.M.F.G.; Aymé, S.; Manuel, J.
Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and n
... without Chemical Abstracts Service Registry Numbers. 799.5025 Section 799.5025 Protection of Environment... orders for mixtures without Chemical Abstracts Service Registry Numbers. This section sets forth a list of mixtures (with no Chemical Abstracts Service Registry Numbers) which are the subject of...
... AFFAIRS Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment....email@example.com . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.'' SUPPLEMENTARY INFORMATION: Title: Open Burn Pit Registry Airborne Hazard...
... Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity: Comment Request... forms of information technology. Title: Open Burn Pit Registry Airborne Hazard Self-Assessment...@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard...
Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung
Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…
Hollak, C.E.M.; Aerts, J.M.F.G.; Aymé, S.; Manuel, J.
Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and n
Wieseler, Beate; Kerekes, Michaela F; Vervoelgyi, Volker; McGauran, Natalie; Kaiser, Thomas
To investigate to what extent three types of documents for reporting clinical trials provide sufficient information for trial evaluation. Retrospective analysis Primary studies and corresponding documents (registry reports, clinical study reports, journal publications) from 16 health technology assessments of drugs conducted by the German Institute for Quality and Efficiency in Health Care between 2006 and February 2011. Data analysis We assessed reporting quality for each study and each available document for six items on methods and six on outcomes, and dichotomised them as "completely reported" or "incompletely reported." For each document type, we calculated the proportion of studies with complete reporting for methods and outcomes, per item and overall, and compared the findings. We identified 268 studies. Publications, study reports and registry reports were available for 192 (72%), 101 (38%), and 78 (29%) studies, respectively. Reporting quality was highest in study reports, which overall provided complete information for 90% of items (1086/1212). Registry reports provided more complete information on outcomes than on methods (overall 330/468 (71%) v 147/468 (31%)); the same applied to publications (594/1152 (52%) v 458/1152 (40%)). In the matched pairs analysis, reporting quality was poorer in registry reports than in study reports for overall methods and outcomes (P<0.001 in each case). Compared with publications, reporting quality was poorer in registry reports for overall methods (P<0.001), but better for outcomes (P=0.005). Registry reports and publications insufficiently report clinical trials but may supplement each other. Measures to improve reporting include the mandatory worldwide implementation of adequate standards for results registration.
Taghavi, Seyed Alireza; Bagheri Lankarani, Kamran; Moini, Maryam; Hamidpour, Laleh; Ardebili, Maryam; Mansoorabadi, Zahra
BACKGROUND Inflammatory bowel diseases (IBD) are debilitating diseases that lead to a variety of problems in a patient's daily life and are a huge burden for the health care system. Since this group of diseases are multifactorial and complex, long-term longitudinal studies are clearly needed to understand them better. A population-based registry (IBD-FaR) has been established in Fars, a southern Iranian province, with the intent to create a reliable data source. This registry will be of considerable help in future planning of health care resources necessary to deal with IBD and to enable investigators to test their theories on the origin and/or treatment of IBD. METHODS This registry is managed by both the Gastroenterohepatology Research Center and Health Policy Research Center at Shiraz University of Medical Sciences. A governing committee is responsible for decisions regarding budget allocations and use of data. The designed questionnaire includes a consent form, basic history data, risk factors, related procedures, medical therapy, and follow-up data. The establishment process has two parallel phases: in the first phase, data is collected from numerous sources, including annual hospital discharge data, referral from university affiliated physicians and private practices, pathologic reports, death certificates, self-referral, and insurance system data. In the interview, the questionnaire is completed and blood samples are taken. The gathered data are entered in a custom-designed, computerized data base. In the second phase, annual follow up interviews will be conducted. New IBD patients are also being registered. This phase will continue indefinitely, in order to include new incident cases. RESULTS Briefly, from May 2011 until December 2011, there were 188 patients [94 (50%) females and 94 (50%) males] diagnosed with IBD who were registered in IBD-FaR. Patients' age range was between 15 and 80 years. A total of 164 (87.2%) patients out of 188 were registered as
Full Text Available Annette Ingeman1, Grethe Andersen2, Heidi H Hundborg1, Søren P Johnsen11Department of Clinical Epidemiology, 2Department of Neurology, Aarhus University Hospital, DenmarkBackground: Stroke patients frequently experience medical complications; yet, data on incidence, causes, and consequences are sparse.Objective: To examine the data validity of medical complications among patients with stroke in a population-based clinical registry and a hospital discharge registry.Methods: We examined the predictive values, sensitivity and specificity of medical complications among patients admitted to specialized stroke units and registered in the Danish National Indicator Project (DNIP and the Danish National Registry of Patients (NRP between January 2003 and December 2006 (n = 8,024. We retrieved and reviewed medical records from a random sample of patients (n = 589, 7.3%.Results: We found substantial variation in the data quality of stroke-related medical complication diagnoses both within the specific complications and between the registries. The positive predictive values ranged from 39.0%–87.1% in the DNIP, and from 0.0%–92.9% in the NRP. The negative predictive values ranged from 71.6%–98.9% in the DNIP and from 63.3% to 97.4% in the NRP. In both registries the specificity of the diagnoses was high. The sensitivity ranged from 23.5% (95% confidence interval [CI]: 14.9–35.4 for falls to 62.9% (95% CI: 54.9–70.4 for urinary infection in the DNIP, and from 0.0 (95% CI: 0.0–4.99 for falls to 18.1% (95% CI: 2.3–51.8 for pressure ulcer in the NRP.Conclusion: The DNIP may be useful for studying medical complications among patients with stroke.Keywords: stroke, medical complications, data validity, clinical database
Gridnev, Vladimir I; Kiselev, Anton R; Posnenkova, Olga M; Popova, Yulia V; Dmitriev, Viktor A; Prokhorov, Mikhail D; Dovgalevsky, Pavel Ya; Oschepkova, Elena V
The Russian Acute Coronary Syndrome Registry (RusACSR) is a retrospective, continuous, nationwide, Web-based registry of patients with acute coronary syndromes (ACS). The RusACSR is a database that uses a secure Web-based interface for data entry by individual users. Participation in the RusACSR is voluntary. Any clinical center that provides health care to ACS patients can take part in the RusACSR. The RusACSR enrolls ACS patients who have undergone care in Russian hospitals from February 2008 to the present. Key data elements and methods of data analysis in the RusACSR are presented in this article. Up to 2015, 213 clinical centers from 36 regions of Russia had participated in the RusACSR. Currently, the database contains data on more than 250 000 ACS patients who underwent care from 2008 to 2015. Some current problems are highlighted in this article. The RusACSR is a perspective project for different epidemiologic studies in Russian ACS patients.
Salter, Amber; Thomas, Nina P; Tyry, Tuula; Cutter, Gary R; Marrie, Ruth Ann
Primary progressive multiple sclerosis (PPMS) represents 10%-15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort ( n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.
S. V. Gautier
Full Text Available Monitoring of a condition and prospects of organ donation and transplantation development in Russia in the form of the National Registry is carried out under the auspices of the Profile commission on transplantology of Minis- try of Health of Russia and the Russian Transplant Society. According to the registry in 2012 the indicator of do- nor activity decreased, but the indicator of transplant activity remained at the level of the last years. Decrease the number of deceased donors managed to be compensated by means of increase of efficiency of donor programs: by increase of the number of donors after brain death and multi-organ explantation, by increase in average of the organs received from one deceased donor. In 2012 the number of transplantations of heart and liver increased. The main funding mechanism for organs transplantation in Russia is the state task to the transplant centers (fede- ral financing, its role increases. For increase of stability of donor providing it is necessary to continue to develop legal base in the organ donation and transplantation sphere.
Garre-Olmo, Josep; Flaqué, Margarita; Gich, Jordi; Pulido, Teresa Osuna; Turbau, Josefina; Vallmajo, Natalia; Viñas, Marta; López-Pousa, Secundí
Background Traditional epidemiological studies do not allow elucidating the reality of referral and diagnosis patterns of dementia in routine clinical practice within a defined territory. This information is useful and necessary in order to plan and allocate healthcare resources. This paper presents the results from a dementia case registry based on epidemiological surveillance fundamentals. Methods Standardised registry of dementia diagnoses made in 2007 by specialised care centres in the Health Region of Girona (RSG) (Spain), which encompasses an area of 5,517 sq. km and a reference population of 690,207 inhabitants. Results 577 cases of dementia were registered, of which 60.7% corresponded to cases of Alzheimer's disease. Presenile dementia accounted for 9.3% of the cases. Mean time between the onset of symptoms and clinical diagnosis was 2.4 years and the severity of the dementia was mild in 60.7% of the cases. High blood pressure, a family history of dementia, dislipidemia, and a past history of depression were the most common conditions prior to the onset of the disease (>20%). Conclusion The ReDeGi is a viable epidemiological surveillance device that provides information about the clinical and demographic characteristics of patients diagnosed with dementia in a defined geographical area. PMID:19175921
Ratigan, Amanda R; Lindsay, Suzanne; Lemus, Hector; Chambers, Christina D; Anderson, Cheryl A M; Cronan, Terry A; Browner, Deirdre K; Wooten, Wilma J
This study examines the demographic representativeness of the County of San Diego Body Mass Index (BMI) Surveillance System to determine if the BMI estimates being obtained from this convenience sample of individuals who visited their healthcare provider for outpatient services can be generalized to the general population of San Diego. Height and weight were transmitted from electronic health records systems to the San Diego Immunization Registry (SDIR). Age, gender, and race/ethnicity of this sample are compared to general population estimates by sub-regional area (SRA) (n = 41) to account for regional demographic differences. A < 10% difference (calculated as the ratio of the differences between the frequencies of a sub-group in this sample and general population estimates obtained from the U.S. Census Bureau) was used to determine representativeness. In 2011, the sample consisted of 352,924 residents aged 2-100 years. The younger age groups (2-11, 12-17 years) and the oldest age group (≥65 years) were representative in 90, 75, and 85% of SRAs, respectively. Furthermore, at least one of the five racial/ethnic groups was represented in 71% of SRAs. This BMI Surveillance System was found to demographically represent some SRAs well, suggesting that this registry-based surveillance system may be useful in estimating and monitoring neighborhood-level BMI data.
Michel, Patrik; Odier, Céline; Rutgers, Matthieu; Reichhart, Marc; Maeder, Philippe; Meuli, Reto; Wintermark, Max; Maghraoui, Ali; Faouzi, Mohamed; Croquelois, Alexandre; Ntaios, George
Stroke registries are valuable tools for obtaining information about stroke epidemiology and management. The Acute STroke Registry and Analysis of Lausanne (ASTRAL) prospectively collects epidemiological, clinical, laboratory and multimodal brain imaging data of acute ischemic stroke patients in the Centre Hospitalier Universitaire Vaudois (CHUV). Here, we provide design and methods used to create ASTRAL and present baseline data of our patients (2003 to 2008). All consecutive patients admitted to CHUV between January 1, 2003 and December 31, 2008 with acute ischemic stroke within 24 hours of symptom onset were included in ASTRAL. Patients arriving beyond 24 hours, with transient ischemic attack, intracerebral hemorrhage, subarachnoidal hemorrhage, or cerebral sinus venous thrombosis, were excluded. Recurrent ischemic strokes were registered as new events. Between 2003 and 2008, 1633 patients and 1742 events were registered in ASTRAL. There was a preponderance of males, even in the elderly. Cardioembolic stroke was the most frequent type of stroke. Most strokes were of minor severity (National Institute of Health Stroke Scale [NIHSS] score ≤ 4 in 40.8% of patients). Cardioembolic stroke and dissections presented with the most severe clinical picture. There was a significant number of patients with unknown onset stroke, including wake-up stroke (n=568, 33.1%). Median time from last-well time to hospital arrival was 142 minutes for known onset and 759 minutes for unknown-onset stroke. The rate of intravenous or intraarterial thrombolysis between 2003 and 2008 increased from 10.8% to 20.8% in patients admitted within 24 hours of last-well time. Acute brain imaging was performed in 1695 patients (97.3%) within 24 hours. In 1358 patients (78%) who underwent acute computed tomography angiography, 717 patients (52.8%) had significant abnormalities. Of the 1068 supratentorial stroke patients who underwent acute perfusion computed tomography (61.3%), focal hypoperfusion
Avi, A; Yehonatan, S; Alon, S; Alexandra, H; Arieh, E
Health profile of trauma victims might affect accident involvement. Information linking medical data to accident epidemiology is lacking. This study aims to identify health factors that increase risk of accident involvement. The Israeli Defense Forces maintains two databases: records of periodical health examination of military personnel and a trauma registry including emergency department referrals of personnel resulting from injury. We identified 5,578 subjects who were examined in the Periodical Health Examination Center and were victims of trauma. We analyzed relation between injuries and various health parameters. Results shows cigarette smoking is more frequent among the population involved in trauma (40% in motor vehicle crash, 37% in fall injury, and 31% in blunt contusion compared with 28% in Periodical Health Examination Center population not involved in trauma, p < 0.05). Odds ratio of smokers involvement in motor vehicle crash is 1.82 (95% confidence interval, 1.25-2.67, p < 0.005). Younger age is relatively more frequent among trauma victims. We conclude that cigarette smokers and younger subjects might be at greater risk of being involved in accidental injuries.
Weiner, Jonathan P; Trish, Erin; Abrams, Chad; Lemke, Klaus
The Affordable Care Act calls for the establishment of state-level health insurance exchanges. The viability and success of these exchanges will require effective risk-adjustment strategies to compensate for differences in enrollees' health status across health plans. This article describes why the Affordable Care Act could lead to favorable or adverse risk selection across plans. It reviews provisions in the act and recent proposed regulations intended to mitigate the problem of risk selection. We performed a simulation that showed that under the premium rating restrictions in the law, large incentives for insurers to attract healthier enrollees will be likely to persist-resulting in substantial overpayment to plans with very healthy enrollees and underpayment to plans with very sick members. We conclude that risk adjustment based on patients' diagnoses, such as will be in place from 2014 on, will yield payments to insurers that will be more accurate than what will come solely from the age-adjusted and other rating allowed by the act. We also describe additional challenges of implementing risk adjustment.
Mota, Inês; Pereira, Ana Margarida; Pereira, Celso; Tomaz, Elza; Ferreira, Manuel Branco; Sabino, Filipa; Coelho, Anabela; Santos, Anabela; Martins, Henrique; Morais-Almeida, Mário
Anaphylaxis has a growing incidence, especially in children. It represents a medical emergency and its successful therapy depends on early and proper intervention. Intramuscular epinephrine, with dose adjustment according to weight and age, is the drug of choice for anaphylaxis treatment. After resolution of the acute reaction, the patient should be kept under clinical surveillance for 6 to 24 hours, due to possible biphasic reactions. Prescription of an epinephrine auto injectable device should be considered in all patients with diagnosed or suspected anaphylaxis; additionally these patients should always be referred to an Immunoallergy consultation, to perform adequate investigation and management in order to reduce future risk. All anaphylaxis episodes must be recorded in The Portuguese Catalogue of Allergies and other Adverse Reactions (Catálogo Português de Alergias e outras Reações Adversas, CPARA), which represents a fundamental tool to share clinical information within the Health System. The present manuscript intends to disclose the most recent Portuguese guidelines for the diagnosis and treatment of anaphylaxis, making its clinical approach more effective and homogeneous, and to promote the use of The Portuguese Catalogue of Allergies and other Adverse Reactions as an essential tool to register and share information on anaphylaxis in Portugal.
López-Pousa, S; Pujol-Gómez, C
This article describes the theoretical basis on which to begin and develop a record of dementias, emphasizing particularly the records of dementias of the programme Vida als Anys in Cataluña. Records of dementias give information regarding the number of cases of dementia and also for planning use of resources as required by the population. A record of dementias obtains, stores, keeps up to date and re-uses information about cases of dementia in a consistent manner. There are two types of records, that dealing with the population and that of the hospital. Records of the population include information from epidemiological studies, both descriptive and analytical, and also data on public health. The hospital records follow and study the natural history of dementias from an aetiological point of view but do not use a population for reference. In Cataluña records of dementias have been done for the populations of Girona, Tarragona and Barcelona and the hospitals of Barcelona, Girona, Lleida, Martorell, Reus, Santa Coloma de Gramanet and Terrassa, as part of the programme Vida al Anys. In order to make satisfactory plans for care in dementia, it is necessary to create databases which are as unified and as exhaustive as possible. Unified records of dementia help understanding of the course and risk factors of the condition.
Full Text Available Morten Schmidt1, Michael Maeng2, Carl-Johan Jakobsen3, Morten Madsen1, Leif Thuesen2, Per Hostrup Nielsen4, Hans Erik Bøtker2, Henrik Toft Sørensen11Department of Clinical Epidemiology, 2Department of Cardiology, 3Department of Anesthesia and Intensive Care, 4Department of Cardiothoracic Surgery, Aarhus University Hospital-Skejby, DenmarkBackground: The Western Denmark Heart Registry (WDHR has not previously been described as a research tool in clinical epidemiology.Objectives: We examined the setting, organization, content, data quality, and research potential of the WDHR.Method: We collected information from members of the WDHR organization, including the committee of representatives, the board, the data management group, and physicians reporting to the database. We retrieved 2008 data from the WDHR to illustrate database variables.Results: The WDHR is a clinical database within a population-based health care system. It was launched on 1 January 1999 to monitor and improve the quality of cardiac intervention in Western Denmark (population: 3.3 million and to allow for clinical and health-service research. More than 200,000 interventions, with 50–150 variables each, have been registered. The data quality is ensured by automatic validation rules at data entry combined with systematic validation procedures and random spot-checks after entry.Conclusions: The WDHR is a valuable research tool because it provides ongoing longitudinal registration of detailed patient and procedural data. The Danish national health care system enables this research because it allows complete follow-up for medical events after cardiac intervention by linkage with multiple medical databases.Keywords: cardiac surgical procedures, catheterization, coronary angiography, database, epidemiology, registries
Full Text Available Peter Hjertholm,1 Kaare Rud Flarup,1 Louise Mahncke Guldbrandt,1 Peter Vedsted1,2 1Research Center for Cancer Diagnosis in Primary Care, Department of Public Health, 2University Clinic for Innovative Health Care Delivery, Diagnostic Centre, Silkeborg Hospital, Department of Clinical Medicine, Aarhus University, Aarhus, Denmark Objective: The aim of this validation study was to assess the completeness of the registrations of chest X-rays (CXR in two different versions of the Danish National Patient Registry (DNPR. Material and methods: We included electronic record data on CXR performed on patients aged 40 to 99 years from nine radiology departments covering 20 Danish hospitals. From each department, we included data from three randomly selected weeks between 2004 and 2011 (reference standard. In two versions of the DNPR from the State Serum Institute (SSI and Statistics Denmark, respectively, we investigated the proportion of registered CXR compared to the reference standard. Furthermore, we compared the completeness of the recorded data according to the responsible department (main department. Results: We identified 11,235 patients and 12,513 CXR in the reference standard. The data from the SSI contained 12,265 (98% CXR, whereas the data from Statistics Denmark comprised 9,151 (73.1% CXR. The completeness of the SSI data was fairly constant across years, radiology departments, medical specialties, and age groups. The data from Statistics Denmark was almost complete in 2011 (95.8%. However, for the remaining study period, the data with radiology departments registered as the main department were lacking in the version from Statistics Denmark, and so the overall completeness was 73.1%. Conclusion: The completeness of CXR registrations varied between 98% and 73% depending on the information source, and this should be considered when investigating radiology services in the basis of DNPR. Keywords: chest X-ray, Danish National Patient Registry
Korir, Anne; Gakunga, Robai; Subramanian, Sujha; Okerosi, Nathan; Chesumbai, Gladys; Edwards, Patrick; Tangka, Florence; Joseph, Rachael; Buziba, Nathan; Rono, Victor; Parkin, Donald Maxwell; Saraiya, Mona
Cancer registration is an important activity for informing cancer control activities. Cancer registries in Sub-Saharan Africa have limited resources to effectively operate because of competing priorities. To date, there has not been an assessment of the resources and funding needed to perform all the activities essential for cancer registration in Kenya. Evidence will help registries to quantify and advocate for the funds needed to sustain, enhance, and expand high quality cancer registration in Kenya. In this study, we used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to evaluate the funding, cost, and labor resources used to perform the cancer registry operations in Nairobi County for two annual periods between July 2012 and June 2014. Funding from grants, research studies, and international organizations provided 70% of the registry operations' cost. For both time periods, the most-costly registry activities were related to administration, management, and training, along with data acquisition activities such as data abstraction, entry, and validation. Even among these core registry activities, however, substantial variations existed. Stable funding for cancer registry operations is necessary to sustain core registry activities in other to deliver high-quality data, which in turn is necessary to foster evidence-based policies to improve cancer outcomes. As stakeholders look into expanding the Nairobi Cancer Registry into a national program, the cost data provided in this study will help justify the funding required for sustaining and expanding registry activities. Copyright © 2016 Elsevier Ltd. All rights reserved.
Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.
Oz, Inbal; Itkin, Yaron; Buchwalter, Asaf; Akulov, Katherine; Hod, Oded
At dry and clean material junctions of rigid materials the corrugation of the sliding energy landscape is dominated by variations of Pauli repulsions. These occur when electron clouds centered around atoms in adjacent layers overlap as they slide across each other. In such cases there exists a direct relation between interfacial surface (in)commensurability and superlubricity, a frictionless and wearless tribological state. The Registry Index is a purely geometrical parameter that quanti?es the degree of interlayer commensurability, thus providing a simple and intuitive method for the prediction of sliding energy landscapes at rigid material interfaces. In the present study, we extend the applicability of the Registry Index to non-parallel surfaces, using a model system of nanotubes motion on ?at hexagonal materials. Our method successfully reproduces sliding energy landscapes of carbon nanotubes on Graphene calculated using a Lennard-Jones type and the Kolmogorov-Crespi interlayer potentials. Furthermore, it...
Full Text Available Many renal lesions may result in chronic kidney disease if not detected early or treated properly. Glomerulonephritis is considered one of the leading causes of end-stage renal disease. The prevalence of different renal lesions were identified by inconsistent studies. The causes of inconsistencies include lack of unified methods in diagnosing and processing renal biopsies by different pathologists, patients selection′s bias for renal biopsy, and the variable policies and protocols adopted by different nephrologists. Establishment of renal biopsy registry may help to surmount these differences. In addition, combined data obtained from renal biopsy renal and replacement therapy registries can help study the long-term outcome of patients with renal diseases.
Sverrild, Asger; Backer, Vibeke; Kyvik, Kirsten Ohm
of sarcoidosis in order to assess the overall contribution of genetic factors to the disease susceptibility. METHODS: Monozygotic and dizygotic twins enrolled in either the Danish or the Finnish population-based, national Twin Cohorts (61,662 pairs in total) were linked to diagnostic information on sarcoidosis...... obtained from the Danish National Patient Registry or the Social Insurance Institution, Finland, registry of re-imbursed medication using the 8th and 10th editions of the International Classification of Diseases. Fisher's exact test was used to compare probandwise concordance rates in different zygosity.......45-0.80). CONCLUSIONS: This study suggests that genetic factors play an important role in the susceptibility to sarcoidosis. This result should encourage the search for molecular genetic markers of the susceptibility to disease....
Although less than 1% of patients with the antiphospholipid syndrome (APS) develop the catastrophic variant, its potentially lethal outcome emphasizes its importance in clinical medicine today. However, the rarity of this variant makes it extraordinarily difficult to study in any systematic way. In order to put together all of the published case reports as well as the new diagnosed cases from all over the world, an international registry of patients with catastrophic APS (CAPS Registry) was created in 2000 by the European Forum on Antiphospholipid Antibodies (see http://www.med.ub.es/MIMMUN/FORUM/CAPS.HTM). Currently, it documents the entire clinical, laboratory and therapeutic data of more than 300 patients whose data has been fully registered.
Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane
BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic...... Mediterranean patients whether they lived in their countries or western European countries. European patients had a lower frequency of the high penetrance M694V mutation and a significant delay of diagnosis (pfever episodes...
Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.
The Open Researcher and Contributor ID (ORCID) registry helps resolve name ambiguity by assigning persistent unique identifiers that automatically link to a researcher's publications, grants, and other activities. This article provides an overview of ORCID and its benefits, citing several examples of its use in cancer and nursing journals. The article also briefly describes My NCBI and the Science Experts Network Curriculum Vitae (SciENcv) and its connection to ORCID.
Full Text Available Abstract Background Preeclampsia is a frequent syndrome and its cause has been linked to multiple factors, making prevention of the syndrome a continuous challenge. One of the suggested risk factors for preeclampsia is advanced maternal age. In the Western countries, maternal age at first delivery has been steadily increasing, yet few studies have examined women of advanced maternal age with preeclampsia. The purpose of this registry-based study was to compare the obstetric outcomes in primiparous and preeclamptic women younger and older than 35 years. Methods The registry-based study used data from three Finnish health registries: Finnish Medical Birth Register, Finnish Hospital Discharge Register and Register of Congenital Malformations. The sample contained women under 35 years of age (N = 15,437 compared with those 35 and over (N = 2,387 who were diagnosed with preeclampsia and had their first singleton birth in Finland between 1997 and 2008. In multivariate modeling, the main outcome measures were Preterm delivery (before 34 and 37 weeks, low Apgar score (5 min., small-for-gestational-age, fetal death, asphyxia, Cesarean delivery, induction, blood transfusion and admission to a Neonatal Intensive Care Unit. Results Women of advanced maternal age (AMA exhibited more preeclampsia (9.4% than younger women (6.4%. They had more prior terminations (25 ( Conclusions Preeclampsia is more common in women with advanced maternal age. Advanced maternal age is an independent risk factor for adverse outcomes in first-time mothers with preeclampsia.
de la Vega, Maria; da Silveira de Carvalho, Hellen M; Ventura Ríos, Lucio; Goycochea Robles, Maria V; Casado, Gustavo C
Rheumatoid arthritis is a systemic inflammatory disorder characterized by joint articular pain and disability. Although there is scarcity of data available on the incidence and prevalence of RA in Latin America, there is a growing recognition of this disease where chronic diseases are on the rise and infectious disease on the decline. RA is a substantial burden to patients, society, and the healthcare system. The heterogeneity identified within RA presents an opportunity for personalized medicine, especially in regions with such demographic diversity as that of Latin America. To understand the long-term effects of treatment for RA especially on safety, registries have been established, a number of which have been created in Latin America. Despite their weaknesses (e.g., lack of controls and randomization), registries have provided additional and complementary information on the use of biologics in clinical practice in Latin America and other regions. Although certain challenges remain in the implementation and maintenance of registries, they continue to provide real-life data to clinical practice contributing to improved patient care.
Full Text Available Systematic data collection in the field of assisted reproductive techniques is performed in Germany since 30 years. Since 1997, data collection is performed electronically and in a prospective way. In 1998, by a code of the German Medical Association participation at the registry has become mandatory for all IVF centres in Germany. Different software solutions can be used in the centres for data collection. All of them have to cooperate with a special DIRmod-DLL, controlling online plausibility and prospectivity of the collected data. More than one million treatment cycles have been reported in the annuals published since 1996 up to 2010. All in all 1.2 millions cycles are included in the registry. Clinical pregnancy rate increased continuously and miscarriage rate decreased. By reduction of the mean number of transferred embryos of about 20% the percentage of born triplets in relationship to all children born after ART decreased of about 80%. It can be shown with the huge number of documented cycles that political decisions exert a dominating influence on treatment and drug choice. The German IVF registry has been established over the last 30 years as an instrument of quality assurance and has experienced highest regard by colleagues and by the international scientific world.
KAZUMATA, Ken; ITO, Masaki; UCHINO, Haruto; NISHIHARA, Hiroshi; HOUKIN, Kiyohiro
The number of clinical research papers published worldwide on moyamoya disease (MMD) has increased recently. However, the majority of the literature comprises retrospective single-center studies collecting data on small numbers of patients. Several multi-center studies are ongoing in Japan; however, the current data are insufficient for comprehensively outlining the various characteristics of MMD. To enhance our knowledge on epidemiologic, vascular, and genetic aspects of MMD, a prospective multicenter registry will be established in Japan that will help to streamline clinical research as well as improve clinical treatments and long-term outcomes. Patients with MMD or secondary moyamoya syndrome referred to the participating centers will be invited to the registry. Demographic and physiological parameters, along with neuroimaging data will be collected chronologically. Clinical events, including neurological, medical, and surgical interventions will be recorded. Whole blood samples will be collected. Extra- and intracranial vascular tissue, and/or cerebrospinal fluid will also be collected from patients who undergo surgical revascularization. These biospecimens will be stored at the repositories and utilized for genome-wide association studies for identifying genetic variants, as well as tissue-specific proteomic, and/or molecular analyses. Ethics approval will be obtained at all facilities collecting biospecimens. The registry will provide descriptive statistics on functional outcomes, surgical techniques used, medications, and neurological events stratified according to patients’ clinical characteristics. We expect this study to provide novel insights in the management of MMD patients and design better therapies. PMID:28070115
Duron, Vincent; DeUgarte, Daniel; Bliss, David; Salazar, Ernesto; Casapia, Martin; Ford, Henri; Upperman, Jeffrey
Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%), motor vehicle collisions (23.3%), and blunt assault (10.5%). Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P analysis of data to enhance prevention and treatment of injuries in Iquitos.