Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

PubMed

Peterson, Jennifer

2016-01-01

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

Feasibility of Linking Population-Based Cancer Registries and Cancer Center Biorepositories

PubMed Central

McCusker, Margaret E.; Allen, Mark; Fernandez-Ami, Allyn; Gandour-Edwards, Regina

2012-01-01

Purpose: Biospecimen-based research offers tremendous promise as a way to increase understanding of the molecular epidemiology of cancers. Population-based cancer registries can augment this research by providing more clinical detail and long-term follow-up information than is typically available from biospecimen annotations. In order to demonstrate the feasibility of this concept, we performed a pilot linkage between the California Cancer Registry (CCR) and the University of California, Davis Cancer Center Biorepository (UCD CCB) databases to determine if we could identify patients with records in both databases. Methods: We performed a probabilistic data linkage between 2180 UCD CCB biospecimen records collected during the years 2005–2009 and all CCR records for cancers diagnosed from 1988–2009 based on standard data linkage procedures. Results: The 1040 UCD records with a unique medical record number, tissue site, and pathology date were linked to 3.3 million CCR records. Of these, 844 (81.2%) were identified in both databases. Overall, record matches were highest (100%) for cancers of the cervix and testis/other male genital system organs. For the most common cancers, matches were highest for cancers of the lung and respiratory system (93%), breast (91.7%), and colon and rectum (89.5%), and lower for prostate (72.9%). Conclusions: This pilot linkage demonstrated that information on existing biospecimens from a cancer center biorepository can be linked successfully to cancer registry data. Linkages between existing biorepositories and cancer registries can foster productive collaborations and provide a foundation for virtual biorepository networks to support population-based biospecimen research. PMID:24845042

Performance of Self-Report to Establish Cancer Diagnoses in Disaster Responders and Survivors, World Trade Center Health Registry, New York, 2001–2007

PubMed Central

Cone, James E.; Alt, Abigail K.; Wu, David R.; Liff, Jonathan M.; Farfel, Mark R.; Stellman, Steven D.

2016-01-01

Objective Large-scale disasters may disrupt health surveillance systems, depriving health officials and researchers of timely and accurate information needed to assess disaster-related health effects and leading to use of less reliable self-reports of health outcomes. In particular, ascertainment of cancer in a population is ordinarily obtained through linkage of self-reported data with regional cancer registries, but exclusive reliance on these sources following a disaster may result in lengthy delays or loss of critical data. To assess the impact of such reliance, we validated self-reported cancer in a cohort of 59,340 responders and survivors of the World Trade Center disaster against data from 11 state cancer registries (SCRs). Methods We focused on residents of the 11 states with SCRs and on cancers diagnosed from September 11, 2001, to the date of their last survey participation. Medical records were also sought in a subset of 595 self-reported cancer patients who were not recorded in an SCR. Results Overall sensitivity and specificity of self-reported cancer were 83.9% (95% confidence interval [CI] 81.9, 85.9) and 98.5% (95% CI 98.4, 98.6), respectively. Site-specific sensitivities were highest for pancreatic (90.9%) and testicular (82.4%) cancers and multiple myeloma (84.6%). Compared with enrollees with true-positive reports, enrollees with false-negative reports were more likely to be non-Hispanic black (adjusted odds ratio [aOR] = 1.8, 95% CI 1.2, 2.9) or Asian (aOR=2.2, 95% CI 1.2, 4.1). Among the 595 cases not recorded in an SCR, 13 of 62 (21%) cases confirmed through medical records were reportable to SCRs. Conclusion Self-report of cancer had relatively high sensitivity among adults exposed to the World Trade Center disaster, suggesting that self-reports of other disaster-related conditions less amenable to external validation may also be reasonably valid. PMID:27252562

An overview of 9/11 experiences and respiratory and mental health conditions among World Trade Center Health Registry enrollees.

PubMed

Farfel, Mark; DiGrande, Laura; Brackbill, Robert; Prann, Angela; Cone, James; Friedman, Stephen; Walker, Deborah J; Pezeshki, Grant; Thomas, Pauline; Galea, Sandro; Williamson, David; Frieden, Thomas R; Thorpe, Lorna

2008-11-01

To date, health effects of exposure to the September 11, 2001 disaster in New York City have been studied in specific groups, but no studies have estimated its impact across the different exposed populations. This report provides an overview of the World Trade Center Health Registry (WTCHR) enrollees, their exposures, and their respiratory and mental health outcomes 2-3 years post-9/11. Results are extrapolated to the estimated universe of people eligible to enroll in the WTCHR to determine magnitude of impact. Building occupants, persons on the street or in transit in lower Manhattan on 9/11, local residents, rescue and recovery workers/volunteers, and area school children and staff were interviewed and enrolled in the WTCHR between September 2003 and November 2004. A total of 71,437 people enrolled in the WTCHR, for 17.4% coverage of the estimated eligible exposed population (nearly 410,000); 30% were recruited from lists, and 70% were self-identified. Many reported being in the dust cloud from the collapsing WTC Towers (51%), witnessing traumatic events (70%), or sustaining an injury (13%). After 9/11, 67% of adult enrollees reported new or worsening respiratory symptoms, 3% reported newly diagnosed asthma, 16% screened positive for probable posttraumatic stress disorder (PTSD), and 8% for serious psychological distress (SPD). Newly diagnosed asthma was most common among rescue and recovery workers who worked on the debris pile (4.1%). PTSD was higher among those who reported Hispanic ethnicity (30%), household income < $25,000 (31%), or being injured (35%). Using previously published estimates of the total number of exposed people per WTCHR eligibility criteria, we estimate between 3,800 and 12,600 adults experienced newly diagnosed asthma and 34,600-70,200 adults experienced PTSD following the attacks, suggesting extensive adverse health impacts beyond the immediate deaths and injuries from the acute event.

An Overview of 9/11 Experiences and Respiratory and Mental Health Conditions among World Trade Center Health Registry Enrollees

PubMed Central

DiGrande, Laura; Brackbill, Robert; Prann, Angela; Cone, James; Friedman, Stephen; Walker, Deborah J.; Pezeshki, Grant; Thomas, Pauline; Galea, Sandro; Williamson, David; Frieden, Thomas R.; Thorpe, Lorna

2008-01-01

To date, health effects of exposure to the September 11, 2001 disaster in New York City have been studied in specific groups, but no studies have estimated its impact across the different exposed populations. This report provides an overview of the World Trade Center Health Registry (WTCHR) enrollees, their exposures, and their respiratory and mental health outcomes 2–3 years post-9/11. Results are extrapolated to the estimated universe of people eligible to enroll in the WTCHR to determine magnitude of impact. Building occupants, persons on the street or in transit in lower Manhattan on 9/11, local residents, rescue and recovery workers/volunteers, and area school children and staff were interviewed and enrolled in the WTCHR between September 2003 and November 2004. A total of 71,437 people enrolled in the WTCHR, for 17.4% coverage of the estimated eligible exposed population (nearly 410,000); 30% were recruited from lists, and 70% were self-identified. Many reported being in the dust cloud from the collapsing WTC Towers (51%), witnessing traumatic events (70%), or sustaining an injury (13%). After 9/11, 67% of adult enrollees reported new or worsening respiratory symptoms, 3% reported newly diagnosed asthma, 16% screened positive for probable posttraumatic stress disorder (PTSD), and 8% for serious psychological distress (SPD). Newly diagnosed asthma was most common among rescue and recovery workers who worked on the debris pile (4.1%). PTSD was higher among those who reported Hispanic ethnicity (30%), household income <$25,000 (31%), or being injured (35%). Using previously published estimates of the total number of exposed people per WTCHR eligibility criteria, we estimate between 3,800 and 12,600 adults experienced newly diagnosed asthma and 34,600–70,200 adults experienced PTSD following the attacks, suggesting extensive adverse health impacts beyond the immediate deaths and injuries from the acute event. PMID:18785012

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

PubMed Central

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

2016-01-01

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

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

PubMed

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-06-01

The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

Comorbidity of 9/11-related PTSD and depression in the World Trade Center Health Registry 10-11 years postdisaster.

PubMed

Caramanica, Kimberly; Brackbill, Robert M; Liao, Tim; Stellman, Steven D

2014-12-01

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. Copyright © 2014 International Society for Traumatic Stress Studies.

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

PubMed Central

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

2018-01-01

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

Building a Diabetes Registry from the Veterans Health Administration's Computerized Patient Record System

PubMed Central

F. O. Kern, Elizabeth; Beischel, Scott; Stalnaker, Randal; Aron, David C.; Kirsh, Susan R.; Watts, Sharon A.

2008-01-01

Background Little information is available describing how to implement a disease registry from an electronic patient record system. The aim of this report is to describe the technology, methods, and utility of a diabetes registry populated by the Veterans Health Information Systems Architecture (VistA), which underlies the computerized patient record system of the Veterans Health Administration (VHA) in Veteran Affairs Integrated Service Network 10 (VISN 10). Methods VISN 10 data from VistA were mapped to a relational SQL-based data system using KB_SQL software. Operational definitions for diabetes, active clinical management, and responsible providers were used to create views of patient-level data in the diabetes registry. Query Analyzer was used to access the data views directly. Semicustomizable reports were created by linking the diabetes registry to a Web page using Microsoft asp.net2. A retrospective observational study design was used to analyze trends in the process of care and outcomes. Results Since October 2001, 81,227 patients with diabetes have enrolled in VISN 10: approximately 42,000 are currently under active management by VISN 10 providers. By tracking primary care visits, we assigned 91% to a clinic group responsible for diabetes care. In the Cleveland Veterans Affairs Medical Center (VAMC), the frequency of mean annual hemoglobin A1c levels ≥9% has declined significantly over 5 years. Almost 4000 patients have been seen in diabetes intervention programs in the Cleveland VAMC over the past 4 years. Conclusions A diabetes registry can be populated from the database underlying the VHA electronic patient record database system and linked to Web-based and ad hoc queries useful for quality improvement. PMID:19885172

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective

PubMed Central

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-01-01

Aim The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. Methods A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. Results The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Conclusions Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers. PMID:28276780

75 FR 42448 - Board of Scientific Counselors (BSC), Coordinating Center for Health Promotion (CCHP): Notice of...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-21

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention (CDC) Board of Scientific Counselors (BSC), Coordinating Center for Health Promotion (CCHP): Notice of Charter Amendment... both the CDC and the Agency for Toxic Substances and Disease Registry. Dated: July 13, 2010. Elaine L...

Disease registries on the nationwide health information network.

PubMed

Russler, Daniel

2011-05-01

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

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

PubMed

Troselj, Mario; Fanton, Davor

2005-01-01

The possibilities of creating a health care resources registry and its operating in Croatia as well as the importance of information in health system are described. At the Croatian Institute of Public Health, monitoring of human resources is performed through the national Health Workers Registry. It also covers basic data on all health units, bed capacities of health facilities included. The initiated health care computerization has urged the idea of forming one more database on physical resources, i.e. on registered medical devices and equipment, more complete. Linking these databases on health resources would produce a single Health Care Resources Registry. The concept views Health Care Resources Registry as part of the overall health information system with centralized information on the health system. The planned development of segments of a single health information system is based on the implementation of the accepted international standards and common network services. Network services that are based on verified Internet technologies are used within a safe, reliable and closed health computer network, which makes up the health intranet (WAN--Wide Area Network). The resource registry is a software solution based on the relational database that monitors history, thus permitting the data collected over a longer period to be analyzed. Such a solution assumes the existence of a directory service, which would replace the current independent software for the Health Workers Registry. In the Health Care Resources Registry, the basic data set encompasses data objects and attributes from the directory service. The directory service is compatible with the LDAP protocol (Lightweight Directory Access Protocol), providing services uniformly to the current records on human and physical resources. Through the storage of attributes defined according to the HL7 (Health Level Seven) standard, directory service is accessible to all applications of the health information system

Center-Specific Factors Associated with Peritonitis Risk-A Multi-Center Registry Analysis.

PubMed

Nadeau-Fredette, Annie-Claire; Johnson, David W; Hawley, Carmel M; Pascoe, Elaine M; Cho, Yeoungjee; Clayton, Philip A; Borlace, Monique; Badve, Sunil V; Sud, Kamal; Boudville, Neil; McDonald, Stephen P

♦ Previous studies have reported significant variation in peritonitis rates across dialysis centers. Limited evidence is available to explain this variability. The aim of this study was to assess center-level predictors of peritonitis and their relationship with peritonitis rate variations. ♦ All incident peritoneal dialysis (PD) patients treated in Australia between October 2003 and December 2013 were included. Data were accessed through the Australia and New Zealand Dialysis and Transplant Registry. The primary outcome was peritonitis rate, evaluated in a mixed effects negative binomial regression model. Peritonitis-free survival was assessed as a secondary outcome in a Cox proportional hazards model. ♦ Overall, 8,711 incident PD patients from 51 dialysis centers were included in the study. Center-level predictors of lower peritonitis rates included smaller center size, high proportion of PD, low peritoneal equilibration test use at PD start, and low proportion of hospitalization for peritonitis. In contrast, a low proportion of automated PD exposure, high icodextrin exposure and low or high use of antifungal prophylaxis at the time of peritonitis were associated with a higher peritonitis rate. Similar results were obtained for peritonitis-free survival. Overall, accounting for center-level characteristics appreciably decreased peritonitis variability among dialysis centers (p = 0.02). ♦ This study identified specific center-level characteristics associated with the variation in peritonitis risk. Whether these factors are directly related to peritonitis risk or surrogate markers for other center characteristics is uncertain and should be validated in further studies. Copyright © 2016 International Society for Peritoneal Dialysis.

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

ERIC Educational Resources Information Center

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

2009-01-01

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

Review article: Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region?

PubMed

Lim, Teck-Onn; Goh, Adrian; Lim, Yam-Ngo; Morad, Zaki

2008-12-01

We review renal registry data from the Asia-Pacific region with an emphasis on their uses in health care and in dialysis care in particular. The review aims to demonstrate the information value of registry data. While renal registry provides a useful data resource for epidemiological research, there are severe methodological limitations in its application for analytical or therapeutic research. However, it is the use of renal registry data for public health and health-care management purposes that registry really comes into its own, and it is primarily for these that governments have invested in national patient and disease registries. We apply data from several renal registries in the Asia-Pacific region to illustrate its wide application for planning dialysis services, for evaluating dialysis practices and health outcomes, with a view to improving the quality of dialysis care. In the course of preparing the review, we have found that the quality and accessibility of renal registry data were highly variable across the region. Given the value of renal registry, every country in the Asia-Pacific region should establish one or should ensure that their current registries are better resourced and developed. Greater data sharing and collaboration among registries in the region could help advance the nephrology to serve our patients better.

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

PubMed Central

2015-01-01

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

Asthma diagnosed after 11 September 2001 among rescue and recovery workers: findings from the World Trade Center Health Registry.

PubMed

Wheeler, Katherine; McKelvey, Wendy; Thorpe, Lorna; Perrin, Megan; Cone, James; Kass, Daniel; Farfel, Mark; Thomas, Pauline; Brackbill, Robert

2007-11-01

Studies have consistently documented declines in respiratory health after 11 September 2001 (9/11) among surviving first responders and other World Trade Center (WTC) rescue, recovery, and clean-up workers. The goal of this study was to describe the risk of newly diagnosed asthma among WTC site workers and volunteers and to characterize its association with WTC site exposures. We analyzed 2003-2004 interview data from the World Trade Center Health Registry for workers who did not have asthma before 9/11 (n = 25,748), estimating the risk of newly diagnosed asthma and its associations with WTC work history, including mask or respirator use. Newly diagnosed asthma was reported by 926 workers (3.6%). Earlier arrival and longer duration of work were significant risk factors, with independent dose responses (p < 0.001), as were exposure to the dust cloud and pile work. Among workers who arrived on 11 September, longer delays in the initial use of masks or respirators were associated with increased risk of asthma; adjusted odds ratios ranged from 1.63 [95% confidence interval (CI), 1.03-2.56) for 1 day of delay to 3.44 (95% CI, 1.43-8.25) for 16-40 weeks delay. The rate of self-reported newly diagnosed asthma was high in the study population and significantly associated with increased exposure to the WTC disaster site. Although we could not distinguish appropriate respiratory protection from inappropriate, we observed a moderate protective effect of mask or respirator use. The findings underscore the need for adequate and timely distribution of appropriate protective equipment and the enforcement of its use when other methods of controlling respiratory exposures are not feasible.

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

PubMed

Choi, Chang Won; Park, Moon Sung

2015-10-01

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

Connecting communities to health research: development of the Project CONNECT minority research registry.

PubMed

Green, Melissa A; Kim, Mimi M; Barber, Sharrelle; Odulana, Abedowale A; Godley, Paul A; Howard, Daniel L; Corbie-Smith, Giselle M

2013-05-01

Prevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members. We describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics. During the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry. A health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations. Copyright © 2013. Published by Elsevier Inc.

Connecting Communities to Health Research: Development of the Project CONNECT Minority Research Registry

PubMed Central

Green, Melissa A.; Kim, Mimi M.; Barber, Sharrelle; Odulana, Abedowale A.; Godley, Paul A.; Howard, Daniel L.; Corbie-Smith, Giselle M.

2013-01-01

Introduction Prevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members. Methods We describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics. Results During the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry. Conclusions A health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations. PMID:23340183

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

PubMed Central

2014-01-01

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

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

PubMed

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

2017-12-15

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

Asthma Diagnosed after 11 September 2001 among Rescue and Recovery Workers: Findings from the World Trade Center Health Registry

PubMed Central

Wheeler, Katherine; McKelvey, Wendy; Thorpe, Lorna; Perrin, Megan; Cone, James; Kass, Daniel; Farfel, Mark; Thomas, Pauline; Brackbill, Robert

2007-01-01

Background Studies have consistently documented declines in respiratory health after 11 September 2001 (9/11) among surviving first responders and other World Trade Center (WTC) rescue, recovery, and clean-up workers. Objectives The goal of this study was to describe the risk of newly diagnosed asthma among WTC site workers and volunteers and to characterize its association with WTC site exposures. Methods We analyzed 2003–2004 interview data from the World Trade Center Health Registry for workers who did not have asthma before 9/11 (n = 25,748), estimating the risk of newly diagnosed asthma and its associations with WTC work history, including mask or respirator use. Results Newly diagnosed asthma was reported by 926 workers (3.6%). Earlier arrival and longer duration of work were significant risk factors, with independent dose responses (p < 0.001), as were exposure to the dust cloud and pile work. Among workers who arrived on 11 September, longer delays in the initial use of masks or respirators were associated with increased risk of asthma; adjusted odds ratios ranged from 1.63 [95% confidence interval (CI), 1.03–2.56) for 1 day of delay to 3.44 (95% CI, 1.43–8.25) for 16–40 weeks delay. Conclusions The rate of self-reported newly diagnosed asthma was high in the study population and significantly associated with increased exposure to the WTC disaster site. Although we could not distinguish appropriate respiratory protection from inappropriate, we observed a moderate protective effect of mask or respirator use. The findings underscore the need for adequate and timely distribution of appropriate protective equipment and the enforcement of its use when other methods of controlling respiratory exposures are not feasible. PMID:18007989

Pregnancy Registries

MedlinePlus

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

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

PubMed

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

2016-01-01

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

Longitudinal determinants of depression among World Trade Center Health Registry enrollees, 14-15 years after the 9/11 attacks.

PubMed

Jacobson, Melanie H; Norman, Christina; Nguyen, Angela; Brackbill, Robert M

2018-03-15

Exposure to the September 11, 2001 (9/11) terrorist attacks has been found to be associated with posttraumatic stress disorder (PTSD) and comorbid PTSD and depression up to 10-11 years post-disaster. However, little is known about the longitudinal predictors of mental health conditions over time. We examined longitudinal determinants of depression within strata of PTSD among 21,258 enrollees of the World Trade Center Health Registry who completed four questionnaires over 14 years of follow-up (Wave 1 in 2003-04; Wave 2 in 2005-06; Wave 3 in 2011-12; and Wave 4 in 2015-16). PTSD status was measured using the PTSD checklist on all four waves and defined as a score of ≥ 44; depression was assessed using the 8-item Patient Health Questionnaire at Waves 3 and 4 and defined as a score of ≥ 10. Across Waves 3 and 4, 18.6% experienced depression, and it was more common among those who ever had PTSD (56.1%) compared with those who had not (5.6%). Across PTSD strata, predictors of depression included low income, unemployment, low social integration and support, post-9/11 traumatic life events, and chronic physical illness. These factors also decreased the likelihood of recovering from depression. Depression symptoms were not measured at Waves 1 and 2; data was self-reported. These findings highlight the substantial burden of depression in a trauma-exposed population 14-15 years post-disaster, especially among those with PTSD. Similar life stressors predicted the course of depression among those with and without PTSD which may inform public health and clinical interventions. Copyright © 2018 The Authors. Published by Elsevier B.V. All rights reserved.

The Illinois Women’s Health Registry: advancing women’s health research and education in Illinois, USA

PubMed Central

Bristol-Gould, Sarah; Desjardins, Michelle; Woodruff, Teresa K

2010-01-01

To achieve the goal of personalized medicine, we must first improve our understanding of the differences in health and illness between men and women. The purpose of the Illinois Women’s Health Registry (USA) is to provide a research and education tool that advances scientific knowledge of sex- and gender-based differences in health and disease. Specifically, the Registry is a confidential 30-min health and lifestyle survey for female residents of Illinois over the age of 18 years. The survey includes questions regarding health, environment, health-related behaviors, symptoms and illnesses or conditions that a participant may have now or has had in the past. By enrolling in the Registry, women throughout the state are provided with information and access to clinical research studies that they may be eligible for, based on their self-reported health information. The Registry not only serves as a platform for recruitment into pivotal research studies, but also represents the beginning of a state-wide database that enables researchers to examine the collective de-identified health information provided by women living in Illinois. Ultimately, a cross-sectional and longitudinal analysis of these data will help to clarify the issues that women themselves identify as their main health concerns. In response to these concerns, specific research studies can be designed and launched, allowing us to eventually deliver tailored treatment and prevention options to women. Finally, by creating a reliable state-focused research tool, developed by staff that are trained in women’s health research, we can compare health issues across the state and apply strategies for improvement where it is needed most. This article will provide examples of sex differences in disease, the lack of federal enforcement for inclusion of women in studies, researcher-perceived burdens and sex-based reasons as to why recruitment of women is considered to be more challenging. In addition, this article

Stroke Trials Registry

MedlinePlus

... Trials News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions ... UT Southwestern Medical Center. Copyright © 1997-2011 - The Internet Stroke Center. All rights reserved. The information contained ...

Examining Health Information Technology Implementations: Case of the Patient-Centered Medical Home

ERIC Educational Resources Information Center

Behkami, Nima A.

2012-01-01

It has been shown that the use of Health Information Technology (HIT) is associated with reduced cost and increased quality of care. This dissertation examined the use of registries in Patient Centered Medical Home (PCMH) practices. A survey questionnaire was sent to a nationwide group of clinics certified for being a PCMH. They were asked to…

Department of Defense Birth and Infant Health Registry: Select Reproductive Health Outcomes, 2003-2014 (Open Access Publisher’s Version)

DTIC Science & Technology

2017-11-01

November 2017 Vol. 24 No. 11 MSMR Page 39 Established following a 1998 directive, the Department of Defense Birth and Infant Health Registry...Registry) team conducts surveillance of select repro- ductive health outcomes among military families. Data are compiled from the Military Health System...adverse reproductive health outcomes. The Regis- try’s diverse research portfolio demonstrates its unique capabilities to answer a wide range of

Are Cancer Registries Unconstitutional?

PubMed Central

McLaughlin, Robert H; Clarke, Christina A; Crawley, LaVera M; Glaser, Sally L

2010-01-01

Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of one's individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institute's SEER Program and the US Centers for Disease Control and Prevention's National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the government's possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease. PMID:20199835

Unmet mental health care need 10–11 years after the 9/11 terrorist attacks: 2011–2012 results from the World Trade Center Health Registry

PubMed Central

2014-01-01

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

Regional Cancer Registries – 20 Years and Growing

Cancer.gov

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.

[Health behaviors between a health promotion demonstration health center and a general health center].

PubMed

Lee, Taewha; Lee, Chung-Yul; Kim, Hee-Soon; Ham, Ok-Kyung

2005-06-01

The purpose of the study was to compare community residents' perceptions, participation, satisfaction, and behavioral changes between a health promotion demonstration health center and general health center. The design of the study was ex-post facto that compared community residents in demonstration health centers and general health centers. The sample included 2,261 community residents who were conveniently selected from demonstration (792 participants) and general health centers (1,496 participants). The results of the study were as follows: 1) Perception and participation rates of exercise, nutrition, and hypertension management programs were significantly higher in the participants of demonstration health centers than those of general health centers.; 2) Satisfaction rates of all programs except the smoking cessation program were significantly higher in the participants of demonstration health centers than those of general health centers. However, only the exercise rate among risk behaviors of participants was significantly higher in demonstration health centers than general health centers. Systematic efforts for health promotion were effective not only in improving the community's awareness, participation, and satisfaction of the program, but also in changing health behaviors. This evidence should be used to foster and disseminate health promotion programs to other health centers to improve community residents' health status and quality of life.

Patient-centered Medical Home Capability and Clinical Performance in HRSA-supported Health Centers

PubMed Central

Shi, Leiyu; Lock, Diana C.; Lee, De-Chih; Lebrun-Harris, Lydie A.; Chin, Marshall H.; Chidambaran, Preeta; Nocon, Robert S.; Zhu, Jinsheng; Sripipatana, Alek

2015-01-01

Objectives To evaluate the relationship between Patient-centered Medical Home (PCMH) model adoption in health centers (HCs) and clinical performance measures and to determine if adoption of PCMH characteristics is associated with better clinical performance. Research Design Data came from the Health Resources and Services Administration’s 2009 Uniform Data System and the 2009 Commonwealth Fund National Survey of Federally Qualified Health Centers. Clinical performance measures included 2 process measures (childhood immunization and cervical cancer screening) and 2 outcome measures (hypertension control and diabetes control). Total and subscale PCMH scores were regressed on the clinical performance measures, adjusting for patient, provider, financial, and institutional characteristics. Results The findings showed different directional relationships, with some PCMH domains (care management, test/referral tracking, quality improvement, and external coordination) showing little or no effect on outcome measures of interest, 1 domain (access/communication) associated with improved outcomes, and 1 domain (patient tracking/registry) associated with worse outcomes. Conclusions This study is among the first to examine the association between PCMH transformation and clinical performance in HCs, providing an understanding of the impact of PCMH adoption within safety-net settings. The mixed results highlight the importance of examining relationships between specific PCMH domains and specific clinical quality measures, in addition to analyzing overall PCMH scores which could yield distorted findings. PMID:25793267

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

PubMed

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

2013-09-01

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

The Research Implications of Prostate Specific Antigen Registry Errors: Data from the Veterans Health Administration.

PubMed

Guo, David P; Thomas, I-Chun; Mittakanti, Harsha R; Shelton, Jeremy B; Makarov, Danil V; Skolarus, Ted A; Cooperberg, Mathew R; Sonn, Geoffrey A; Chung, Benjamin I; Brooks, James D; Leppert, John T

2018-04-06

We sought to characterize the effects of prostate specific antigen registry errors on clinical research by comparing cohorts based on cancer registry prostate specific antigen values with those based directly on results in the electronic health record. We defined sample cohorts of men with prostate cancer using data from the VHA (Veterans Health Administration), including those with a prostate specific antigen value less than 4.0, 4.0 to 10.0, 10.0 to 20.0 and 20.0 to 98.0 ng/ml, respectively. We compared the composition of each cohort and overall patient survival when using PSA values from the VACCR (Veteran Affairs Central Cancer Registry) vs the gold standard electronic health record laboratory file results. There was limited agreement among cohorts when defined by cancer registry PSA values vs the laboratory file of the electronic health record. The least agreement of 58% was seen in patients with PSA less than 4.0 ng/ml and greatest agreement of 89% was noted among patients with PSA between 4.0 and 10.0 ng/ml. In each cohort patients assigned to a cohort based only on the cancer registry PSA value had significantly different overall survival when compared with patients assigned based on registry and laboratory file PSA values. Cohorts based exclusively on cancer registry PSA values may have high rates of misclassification that can introduce concerning differences in key characteristics and result in measurable differences in clinical outcomes. Copyright © 2018 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

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

PubMed Central

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

2013-01-01

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

Registries in orthopaedics.

PubMed

Delaunay, C

2015-02-01

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

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

PubMed

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

2014-10-15

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

Electronic health records and disease registries to support integrated care in a health neighbourhood: an ontology-based methodology.

PubMed

Liaw, Siaw-Teng; Taggart, Jane; Yu, Hairong; Rahimi, Alireza

2014-01-01

Disease registries derived from Electronic Health Records (EHRs) are widely used for chronic disease management (CDM). However, unlike national registries which are specialised data collections, they are usually specific to an EHR or organization such as a medical home. We approached registries from the perspective of integrated care in a health neighbourhood, considering data quality issues such as semantic interoperability (consistency), accuracy, completeness and duplication. Our proposition is that a realist ontological approach is required to systematically and accurately identify patients in an EHR or data repository of EHRs, assess intrinsic data quality and fitness for use by members of the multidisciplinary integrated care team. We report on this approach as applied to routinely collected data in an electronic practice based research network in Australia.

[The Murcia Twin Registry. A resource for research on health-related behaviour].

PubMed

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.

The Registry of Knowledge Translation Methods and Tools: a resource to support evidence-informed public health.

PubMed

Peirson, Leslea; Catallo, Cristina; Chera, Sunita

2013-08-01

This paper examines the development of a globally accessible online Registry of Knowledge Translation Methods and Tools to support evidence-informed public health. A search strategy, screening and data extraction tools, and writing template were developed to find, assess, and summarize relevant methods and tools. An interactive website and searchable database were designed to house the registry. Formative evaluation was undertaken to inform refinements. Over 43,000 citations were screened; almost 700 were full-text reviewed, 140 of which were included. By November 2012, 133 summaries were available. Between January 1 and November 30, 2012 over 32,945 visitors from more than 190 countries accessed the registry. Results from 286 surveys and 19 interviews indicated the registry is valued and useful, but would benefit from a more intuitive indexing system and refinements to the summaries. User stories and promotional activities help expand the reach and uptake of knowledge translation methods and tools in public health contexts. The National Collaborating Centre for Methods and Tools' Registry of Methods and Tools is a unique and practical resource for public health decision makers worldwide.

Post-9/11 drug- and alcohol- related hospitalizations among World Trade Center Health Registry enrollees, 2003-2010.

PubMed

Hirst, Andrew; Miller-Archie, Sara A; Welch, Alice E; Li, Jiehui; Brackbill, Robert M

2018-06-01

To describe patterns of drug- and alcohol-related hospitalizations among persons exposed to the 2001 World Trade Center (WTC) terrorist attacks and to assess whether 9/11-related exposures or post-9/11 post-traumatic stress disorder (PTSD) were associated with increased odds of hospitalization. Data for adult enrollees in the WTC Health Registry, a prospective cohort study, were linked to New York State (NYS) administrative hospitalization data to identify alcohol- and drug-related hospitalizations from enrollment to December 31, 2010. Logistic regression was used to analyze the associations between substance use-related hospitalization, 9/11-related exposure and PTSD. Of 41,176 NYS resident enrollees, we identified 626 (1.5%) who had at least one alcohol- or drug-related hospitalization; 53.4% (n = 591) of these hospitalizations were for alcohol only diagnoses and 46.6% (n = 515) were drug-related. Witnessing ≥3 traumatic events on 9/11 was significantly associated with having a drug-related hospitalization (AOR 1.4, 95% CI = [1.1, 1.9]). PTSD was significantly associated with both having a drug-related hospitalization as well as an alcohol only-related hospitalization. (AOR 2.6, 95% CI = [2.0, 3.3], AOR 1.8, 95% CI = [1.4, 2.3], respectively). Witnessing traumatic events and having PTSD were independently associated with substance use-related hospitalizations. Targeting people who witnessed traumatic events on 9/11 and/or who have PTSD for substance use- treatment could reduce alcohol and drug-related hospitalizations connected to 9/11. Copyright © 2018 The Authors. Published by Elsevier B.V. All rights reserved.

Health risk communication at the Agency for Toxic Substances and Disease Registry

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

Johnson, B.L.

The purpose of this paper is to describe efforts related to risk communication at the Agency for Toxic Substances and Disease Registry (ATSDR). The agency was created by Congress to fulfill health-related responsibilities specified in Superfund. Four areas are described for which ATSDR has responsibility under Superfund in the context of how each area relates to risk communication. These include health assessments, toxicological profiles, medical education and consultation, and exposure registries. The discussion is structured around four elements: a description of the activity, the message that is being communicated, the target audience, and how the risk is communicated to thismore » group.« less

Kaiser Permanente implant registries benefit patient safety, quality improvement, cost-effectiveness.

PubMed

Paxton, Elizabeth W; Kiley, Mary-Lou; Love, Rebecca; Barber, Thomas C; Funahashi, Tadashi T; Inacio, Maria C S

2013-06-01

In response to the increased volume, risk, and cost of medical devices, in 2001 Kaiser Permanente (KP) developed implant registries to enhance patient safety and quality, and to evaluate cost-effectiveness. Using an integrated electronic health record system, administrative databases, and other institutional databases, orthopedic, cardiology, and vascular implant registries were developed in 2001, 2006, and 2011, respectively. These registries monitor patients, implants, clinical practices, and surgical outcomes for KP's 9 million members. Critical to registry success is surgeon leadership and engagement; each geographical region has a surgeon champion who provides feedback on registry initiatives and disseminates registry findings. The registries enhance patient safety by providing a variety of clinical decision tools such as risk calculators, quality reports, risk-adjusted medical center reports, summaries of surgeon data, and infection control reports to registry stakeholders. The registries are used to immediately identify patients with recalled devices, evaluate new and established device technology, and identify outlier implants. The registries contribute to cost-effectiveness initiatives through collaboration with sourcing and contracting groups and confirming adherence to device formulary guidelines. Research studies based on registry data have directly influenced clinical best practices. Registries are important tools to evaluate longitudinal device performance and safety, study the clinical indications for and outcomes of device implantation, respond promptly to recalls and advisories, and contribute to the overall high quality of care of our patients.

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

PubMed

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

2013-01-01

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

Second generation registry framework.

PubMed

Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

2014-01-01

Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that

Second generation registry framework

PubMed Central

2014-01-01

Background Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. Results This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. Conclusions We introduce the

The occupational safety of health professionals working at community and family health centers.

PubMed

Ozturk, Havva; Babacan, Elif

2014-10-01

Healthcare professionals encounter many medical risks while providing healthcare services to individuals and the community. Thus, occupational safety studies are very important in health care organizations. They involve studies performed to establish legal, technical, and medical measures that must be taken to prevent employees from sustaining physical or mental damage because of work hazards. This study was conducted to determine if the occupational safety of health personnel at community and family health centers (CHC and FHC) has been achieved. The population of this cross-sectional study comprised 507 nurses, 199 physicians, and 237 other medical personnel working at a total of 18 family health centers (FHC) and community health centers (CHC) in Trabzon, Turkey. The sample consisted of a total of 418 nurses, 156 physicians, and 123 other medical personnel. Sampling method was not used, and the researchers tried to reach the whole population. Data were gathered with the Occupational Safety Scale (OSS) and a questionnaire regarding demographic characteristics and occupational safety. According to the evaluations of all the medical personnel, the mean ± SD of total score of the OSS was 3.57 ± 0.98; of the OSS's subscales, the mean ± SD of the health screening and registry systems was 2.76 ± 1.44, of occupational diseases and problems was 3.04 ± 1.3 and critical fields control was 3.12 ± 1.62. In addition, occupational safety was found more insufficient by nurses (F = 14.18; P < 0.001). All healthcare personnel, particularly nurses working in CHCs and FHCs found occupational safety to be insufficient as related to protective and supportive activities.

Using an International Clinical Registry of Regional Anesthesia to Identify Targets for Quality Improvement

PubMed Central

Sites, Brian D.; Barrington, Michael J.; Davis, Matthew

2014-01-01

Background Despite the widespread use of regional anesthesia, limited information on clinical performance exists. Institutions, therefore, have little knowledge of how they are performing in regards to both safety and effectiveness. In this study, we demonstrate how a medical institution (or physician/physician group) may use data from a multi-center clinical registry of regional anesthesia to inform quality improvement strategies. Methods We analyzed data from the International Registry of Regional Anesthesia that includes prospective data on peripheral regional anesthesia procedures from 19 centers located around the world. Using data from the clinical registry, we present summary statistics of the overall safety and effectiveness of regional anesthesia. Furthermore, we demonstrate, using a variety of performance measures, how these data can be used by hospitals to identify areas for quality improvement. To do so, we compare the performance of one member institution (a United States medical center in New Hampshire) to that of the other 18 member institutions of the clinical registry. Results The clinical registry contained information on 23,271 blocks that were performed between June 1, 2011, and May 1, 2014, on 16,725 patients. The overall success rate was 96.7%, immediate complication rate was 2.2%, and the all-cause 60-day rate of neurological sequelae was 8.3 (95% CI, 7.2–9.7) per 10,000. Registry wide major hospital events included 7 wrong site blocks, 3 seizures, 1 complete heart block, 1 retroperitoneal hematoma, and 3 pneumothoraces. For our reference medical center, we identified areas meriting quality improvement. Specifically, after accounting for differences in the age, sex, and health status of patient populations, the reference medical center appeared to rely more heavily on opioids for post procedure management, had higher patient pain scores, and experienced delayed discharge when compared with other member institutions. Conclusions To our

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

PubMed

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

2015-01-01

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

The Three Mile Island Population Registry.

PubMed

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

1983-01-01

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

The Three Mile Island Population Registry.

PubMed Central

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

1983-01-01

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

Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data.

PubMed

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

2017-01-01

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 both

National Health Information Center

MedlinePlus

... About ODPHP National Health Information Center National Health Information Center The National Health Information Center (NHIC) is ... of interest View the NHO calendar . Federal Health Information Centers and Clearinghouses Federal Health Information Centers and ...

The Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF) Registry: Rationale and Design.

PubMed

Stewart, Elizabeth A; Lytle, Barbara L; Thomas, Laine; Wegienka, Ganesa R; Jacoby, Vanessa; Diamond, Michael P; Nicholson, Wanda K; Anchan, Raymond M; Venable, Sateria; Wallace, Kedra; Marsh, Erica E; Maxwell, George L; Borah, Bijan J; Catherino, William H; Myers, Evan R

2018-05-08

To design and establish a uterine fibroid (UF) registry based in the United States (US) to provide comparative effectiveness data regarding UF treatment. We report here the design and initial recruitment for the Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF) registry (Clinicaltrials.gov, NCT02260752), funded by the Agency for Healthcare Research and Quality (AHRQ) in collaboration with the-Patient-Centered Outcomes Research Institute (PCORI). COMPARE-UF is designed to help answer critical questions about treatment options for women with symptomatic UF. Women undergoing a procedure for UF (hysterectomy, myomectomy [abdominal, hysteroscopic, vaginal and laparoscopic/robotic], endometrial ablation, radiofrequency fibroid ablation, uterine artery embolization, magnetic resonance guided focused ultrasound or progestin-releasing intrauterine device insertion) at one of the COMPARE-UF sites are invited to participate in a prospective registry with three years follow-up for post-procedural outcomes. Enrolled participants provide annual follow-up through an online portal or through traditional phone contact. A central data abstraction center provides information obtained from imaging, operative or procedural notes and pathology reports. Women with uterine fibroids and other stakeholders are a key part of the COMPARE-UF registry and participate at all points from study design to dissemination of results. We built a network of nine clinical sites across the US with expertise in the care of women with UF to capture geographic, racial, ethnic and procedural diversity. Of the initial 2031 women enrolled in COMPARE-UF, 42% are self-identified as Black or African-American and 40% are age 40 years or younger with 16% of participants under age 35. Women undergoing myomectomy comprise the largest treatment group at 46% of all procedures with laparoscopic or robotic myomectomy comprising the largest subset of myomectomies at 19% of all

Mexican registry of pulmonary hypertension: REMEHIP.

PubMed

Sandoval Zarate, Julio; Jerjes-Sanchez, Carlos; Ramirez-Rivera, Alicia; Zamudio, Tomas Pulido; Gutierrez-Fajardo, Pedro; Elizalde Gonzalez, Jose; Leon, Mario Seoane Garcia De; Gamez, Miguel Beltran; Abril, Francisco Moreno Hoyos; Michel, Rodolfo Parra; Aguilar, Humberto Garcia

REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension. Will be included patients of age >2 years and diagnosis of pulmonary hypertension by right heart catheterization within Group 1 and Group 4 of the World Health Organization classification. The structure, data collection and data analysis will be based on quality current recommendations for registries. The protocol has been approved by institutional ethics committees in all participant centers. All patients will sign an informed consent form. Currently in Mexico, there is a need of observational registries that include patients with treatment in the everyday clinical practice so the data could be validated and additional information could be obtained versus the one from the clinical trials. In this way, REMEHIP emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2016 Instituto Nacional de Cardiología Ignacio Chávez. Publicado por Masson Doyma México S.A. All rights reserved.

Using Arden Syntax to Identify Registry-Eligible Very Low Birth Weight Neonates from the Electronic Health Record

PubMed Central

Sarkar, Indra Neil; Chen, Elizabeth S.; Rosenau, Paul T.; Storer, Matthew B.; Anderson, Beth; Horbar, Jeffrey D.

2014-01-01

Condition-specific registries are essential resources for supporting epidemiological, quality improvement, and clinical trial studies. The identification of potentially eligible patients for a given registry often involves a manual process or use of ad hoc software tools. With the increased availability of electronic health data, such as within Electronic Health Record (EHR) systems, there is potential to develop healthcare standards based approaches for interacting with these data. Arden Syntax, which has traditionally been used to represent medical knowledge for clinical decision support, is one such standard that may be adapted for the purpose of registry eligibility determination. In this feasibility study, Arden Syntax was explored for its ability to represent eligibility criteria for a registry of very low birth weight neonates. The promising performance (100% recall; 97% precision) of the Arden Syntax approach at a single institution suggests that a standards-based methodology could be used to robustly identify registry-eligible patients from EHRs. PMID:25954412

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

PubMed Central

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

2018-01-01

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

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

PubMed

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

2016-02-01

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

Breast cancer treatment across health care systems: linking electronic medical records and state registry data to enable outcomes research.

PubMed

Kurian, Allison W; Mitani, Aya; Desai, Manisha; Yu, Peter P; Seto, Tina; Weber, Susan C; Olson, Cliff; Kenkare, Pragati; Gomez, Scarlett L; de Bruin, Monique A; Horst, Kathleen; Belkora, Jeffrey; May, Suepattra G; Frosch, Dominick L; Blayney, Douglas W; Luft, Harold S; Das, Amar K

2014-01-01

Understanding of cancer outcomes is limited by data fragmentation. In the current study, the authors analyzed the information yielded by integrating breast cancer data from 3 sources: electronic medical records (EMRs) from 2 health care systems and the state registry. Diagnostic test and treatment data were extracted from the EMRs of all patients with breast cancer treated between 2000 and 2010 in 2 independent California institutions: a community-based practice (Palo Alto Medical Foundation; "Community") and an academic medical center (Stanford University; "University"). The authors incorporated records from the population-based California Cancer Registry and then linked EMR-California Cancer Registry data sets of Community and University patients. The authors initially identified 8210 University patients and 5770 Community patients; linked data sets revealed a 16% patient overlap, yielding 12,109 unique patients. The percentage of all Community patients, but not University patients, treated at both institutions increased with worsening cancer prognostic factors. Before linking the data sets, Community patients appeared to receive less intervention than University patients (mastectomy: 37.6% vs 43.2%; chemotherapy: 35% vs 41.7%; magnetic resonance imaging: 10% vs 29.3%; and genetic testing: 2.5% vs 9.2%). Linked Community and University data sets revealed that patients treated at both institutions received substantially more interventions (mastectomy: 55.8%; chemotherapy: 47.2%; magnetic resonance imaging: 38.9%; and genetic testing: 10.9% [P < .001 for each 3-way institutional comparison]). Data linkage identified 16% of patients who were treated in 2 health care systems and who, despite comparable prognostic factors, received far more intensive treatment than others. By integrating complementary data from EMRs and population-based registries, a more comprehensive understanding of breast cancer care and factors that drive treatment use was obtained. © 2013

The Québec BCG Vaccination Registry (1956-1992): assessing data quality and linkage with administrative health databases.

PubMed

Rousseau, Marie-Claude; Conus, Florence; Li, Jun; Parent, Marie-Élise; El-Zein, Mariam

2014-01-09

Vaccination registries have undoubtedly proven useful for estimating vaccination coverage as well as examining vaccine safety and effectiveness. However, their use for population health research is often limited. The Bacillus Calmette-Guérin (BCG) Vaccination Registry for the Canadian province of Québec comprises some 4 million vaccination records (1926-1992). This registry represents a unique opportunity to study potential associations between BCG vaccination and various health outcomes. So far, such studies have been hampered by the absence of a computerized version of the registry. We determined the completeness and accuracy of the recently computerized BCG Vaccination Registry, as well as examined its linkability with demographic and administrative medical databases. Two systematically selected verification samples, each representing ~0.1% of the registry, were used to ascertain accuracy and completeness of the electronic BCG Vaccination Registry. Agreement between the paper [listings (n = 4,987 records) and vaccination certificates (n = 4,709 records)] and electronic formats was determined along several nominal and BCG-related variables. Linkage feasibility with the Birth Registry (probabilistic approach) and provincial Healthcare Registration File (deterministic approach) was examined using nominal identifiers for a random sample of 3,500 individuals born from 1961 to 1974 and BCG vaccinated between 1970 and 1974. Exact agreement was observed for 99.6% and 81.5% of records upon comparing, respectively, the paper listings and vaccination certificates to their corresponding computerized records. The proportion of successful linkage was 77% with the Birth Registry, 70% with the Healthcare Registration File, 57% with both, and varied by birth year. Computerization of this Registry yielded excellent results. The registry was complete and accurate, and linkage with administrative databases was highly feasible. This study represents the first step towards

Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

PubMed

Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

2017-11-28

Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

Determinants of Physicians' Intention to Collect Data Exhaustively in Registries: an Exploratory Study in Bamako's Community Health Centres.

PubMed

Ly, B A; Gagnon, M-P; Légaré, F; Rousseau, M; Simonyan, D

2015-06-01

The incomplete collection of health data is a prevalent problem in healthcare systems around the world, especially in developing countries. Missing data hinders progress in population health and perpetuates inefficiencies in healthcare systems. This study aims to identify the factors that predict the intention of physicians practicing in community health centres of Bamako, Mali, to collect data exhaustively in medical registries. A cross sectional study. In January and February 2011, we conducted a study with a random sample of thirty two physicians practicing in community health centres of Bamako, using a questionnaire. Data was analyzed by using descriptive statistics, correlations and linear regression. Trained investigators administered a questionnaire measuring physicians' sociodemographic and professional characteristics as well as constructs from the Theory of Planned Behaviour. Our results showed that physicians' intention to collect data exhaustively is influenced by subjective norms and by the physician's number of years in practice. the results of this study could be used as a guide for health workers and decision makers to improve the quality of health information collected in community health centers.

Abolishing Fees at Health Centers in the Context of Community Case Management of Malaria: What Effects on Treatment-Seeking Practices for Febrile Children in Rural Burkina Faso?

PubMed

Druetz, Thomas; Fregonese, Federica; Bado, Aristide; Millogo, Tieba; Kouanda, Seni; Diabaté, Souleymane; Haddad, Slim

2015-01-01

Burkina Faso started nationwide community case management of malaria (CCMm) in 2010. In 2011, health center user fees for children under five were abolished in some districts. To assess the effects of concurrent implementation of CCMm and user fees abolition on treatment-seeking practices for febrile children. This is a natural experiment conducted in the districts of Kaya (CCMm plus user fees abolition) and Zorgho (CCMm only). Registry data from 2005 to 2014 on visits for malaria were collected from all eight rural health centers in the study area. Annual household surveys were administered during malaria transmission season in 2011 and 2012 in 1,035 randomly selected rural households. Interrupted time series models were fitted for registry data and Fine and Gray's competing risks models for survey data. User fees abolition in Kaya significantly increased health center use by eligible children with malaria (incidence rate ratio for intercept change = 2.1, p <0.001). In 2011, in Kaya, likelihood of health center use for febrile children was three times higher and CHW use three times lower when caregivers knew services were free. Among the 421 children with fever in 2012, the delay before visiting a health center was significantly shorter in Kaya than in Zorgho (1.46 versus 1.79 days, p <0.05). Likelihood of visiting a health center on the first day of fever among households <2.5 km or <5 km from a health center was two and three times higher in Kaya than in Zorgho, respectively (p <0.001). User fees abolition reduced visit delay for febrile children living close to health centers. It also increased demand for and use of health center for children with malaria. Concurrently, demand for CHWs' services diminished. User fees abolition and CCMm should be coordinated to maximize prompt access to treatment in rural areas.

Malaysian Twin Registry.

PubMed

Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

2013-02-01

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

Inception of a national multidisciplinary registry for stereotactic radiosurgery.

PubMed

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

2016-01-01

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

The Québec BCG Vaccination Registry (1956–1992): assessing data quality and linkage with administrative health databases

PubMed Central

2014-01-01

Background Vaccination registries have undoubtedly proven useful for estimating vaccination coverage as well as examining vaccine safety and effectiveness. However, their use for population health research is often limited. The Bacillus Calmette-Guérin (BCG) Vaccination Registry for the Canadian province of Québec comprises some 4 million vaccination records (1926-1992). This registry represents a unique opportunity to study potential associations between BCG vaccination and various health outcomes. So far, such studies have been hampered by the absence of a computerized version of the registry. We determined the completeness and accuracy of the recently computerized BCG Vaccination Registry, as well as examined its linkability with demographic and administrative medical databases. Methods Two systematically selected verification samples, each representing ~0.1% of the registry, were used to ascertain accuracy and completeness of the electronic BCG Vaccination Registry. Agreement between the paper [listings (n = 4,987 records) and vaccination certificates (n = 4,709 records)] and electronic formats was determined along several nominal and BCG-related variables. Linkage feasibility with the Birth Registry (probabilistic approach) and provincial Healthcare Registration File (deterministic approach) was examined using nominal identifiers for a random sample of 3,500 individuals born from 1961 to 1974 and BCG vaccinated between 1970 and 1974. Results Exact agreement was observed for 99.6% and 81.5% of records upon comparing, respectively, the paper listings and vaccination certificates to their corresponding computerized records. The proportion of successful linkage was 77% with the Birth Registry, 70% with the Healthcare Registration File, 57% with both, and varied by birth year. Conclusions Computerization of this Registry yielded excellent results. The registry was complete and accurate, and linkage with administrative databases was highly feasible. This

Current situation and challenge of registry in China.

PubMed

Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

2014-09-01

Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

[Respiratory disease registries in Spain: fundamentals and organization].

PubMed

Lara, Beatriz; Morales, Pilar; Blanco, Ignacio; Vendrell, Montserrat; de Gracia Roldán, Javier; Monreal, Manel; Orriols, Ramón; Isidro, Isabel; Abú-Shams, Khalil; Escribano, Pilar; Villena, Victoria; Rodrigo, Teresa; Vidal Plà, Rafael; García-Yuste, Mariano; Miravitlles, Marc

2011-08-01

This present paper describes the general characteristics, objectives and organizational aspects of the respiratory disease registries in Spain with the aim to report their activities and increase their diffusion. The document compiles information on the following registries: the Spanish Registry of Patients with Alpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of Thromboembolic Disease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish Multi-center Study of Neuroendocrine Pulmonary Tumors. Our paper provides information on each of the registries cited. Each registry has compiled specific clinical information providing data in real situations, and completes the results obtained from clinical assays. Said information has been published both in national as well as international publications and has lead to the creation of various guidelines. Therefore, the activities of the professionals involved in the registries have spread the knowledge about the diseases studied, promoting the exchange of information among workgroups. Copyright © 2010 SEPAR. Published by Elsevier Espana. All rights reserved.

eRegistries: indicators for the WHO Essential Interventions for reproductive, maternal, newborn and child health.

PubMed

Flenady, Vicki; Wojcieszek, Aleena M; Fjeldheim, Ingvild; Friberg, Ingrid K; Nankabirwa, Victoria; Jani, Jagrati V; Myhre, Sonja; Middleton, Philippa; Crowther, Caroline; Ellwood, David; Tudehope, David; Pattinson, Robert; Ho, Jacqueline; Matthews, Jiji; Bermudez Ortega, Aurora; Venkateswaran, Mahima; Chou, Doris; Say, Lale; Mehl, Garret; Frøen, J Frederik

2016-09-30

Electronic health registries - eRegistries - can systematically collect relevant information at the point of care for reproductive, maternal, newborn and child health (RMNCH). However, a suite of process and outcome indicators is needed for RMNCH to monitor care and to ensure comparability between settings. Here we report on the assessment of current global indicators and the development of a suite of indicators for the WHO Essential Interventions for use at various levels of health care systems nationally and globally. Currently available indicators from both household and facility surveys were collated through publicly available global databases and respective survey instruments. We then developed a suite of potential indicators and associated data points for the 45 WHO Essential Interventions spanning preconception to newborn care. Four types of performance indicators were identified (where applicable): process (i.e. coverage) and outcome (i.e. impact) indicators for both screening and treatment/prevention. Indicators were evaluated by an international expert panel against the eRegistries indicator evaluation criteria and further refined based on feedback by the eRegistries technical team. Of the 45 WHO Essential Interventions, only 16 were addressed in any of the household survey data available. A set of 216 potential indicators was developed. These indicators were generally evaluated favourably by the panel, but difficulties in data ascertainment, including for outcome measures of cause-specific morbidity and mortality, were frequently reported as barriers to the feasibility of indicators. Indicators were refined based on feedback, culminating in the final list of 193 total unique indicators: 93 for preconception and antenatal care; 53 for childbirth and postpartum care; and 47 for newborn and small and ill baby care. Large gaps exist in the availability of information currently collected to support the implementation of the WHO Essential Interventions. The

Vision for a Global Registry of Anticipated Public Health Studies

PubMed Central

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.

2007-01-01

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

EHR-based disease registries to support integrated care in a health neighbourhood: an ontology-based methodology.

PubMed

Liaw, Siaw-Teng; Taggart, Jane; Yu, Hairong

2014-01-01

Disease registries derived from Electronic Health Records (EHRs) are widely used for chronic disease management. We approached registries from the perspective of integrated care in a health neighbourhood, considering data quality issues such as semantic interoperability (consistency), accuracy, completeness and duplication. Our proposition is that a realist ontological approach is required to accurately identify patients in an EHR or data repository, assess data quality and fitness for use by the multidisciplinary integrated care team. We report on this approach with routinely collected data in a practice based research network in Australia.

The Kaiser Permanente implant registries: effect on patient safety, quality improvement, cost effectiveness, and research opportunities.

PubMed

Paxton, Elizabeth W; Inacio, Maria Cs; Kiley, Mary-Lou

2012-01-01

Considering the high cost, volume, and patient safety issues associated with medical devices, monitoring of medical device performance is critical to ensure patient safety and quality of care. The purpose of this article is to describe the Kaiser Permanente (KP) implant registries and to highlight the benefits of these implant registries on patient safety, quality, cost effectiveness, and research. Eight KP implant registries leverage the integrated health care system's administrative databases and electronic health records system. Registry data collected undergo quality control and validation as well as statistical analysis. Patient safety has been enhanced through identification of affected patients during major recalls, identification of risk factors associated with outcomes of interest, development of risk calculators, and surveillance programs for infections and adverse events. Effective quality improvement activities included medical center- and surgeon-specific profiles for use in benchmarking reports, and changes in practice related to registry information output. Among the cost-effectiveness strategies employed were collaborations with sourcing and contracting groups, and assistance in adherence to formulary device guidelines. Research studies using registry data included postoperative complications, resource utilization, infection risk factors, thromboembolic prophylaxis, effects of surgical delay on concurrent injuries, and sports injury patterns. The unique KP implant registries provide important information and affect several areas of our organization, including patient safety, quality improvement, cost-effectiveness, and research.

The Wisconsin immunization registry experience: comparing real-time and batched file submissions from health care providers.

PubMed

Schauer, Stephanie L; Maerz, Thomas R; Verdon, Matthew J; Hopfensperger, Daniel J; Davis, Jeffrey P

2014-06-01

The Wisconsin Immunization Registry is a confidential, web-based system used since 1999 as a centralized repository of immunization information for Wisconsin residents. Provide evidence based on Registry experiences with electronic data exchange, comparing the benefits and drawbacks of using the Health Level 7 standard, including the option for real time data exchange vs the flat file method. For data regarding vaccinations received by children aged 4 months through 6 years with Wisconsin addresses that were submitted to the Registry during 2010 and 2011, data timeliness (days from vaccine administration to date information was received) and completeness (percentage of records received that include core data elements for electronic storage) were compared by file submission method. Data submitted using Health Level 7 were substantially more timely than data submitted using the flat file method. Additionally, data submitted using Health Level 7 were substantially more complete for each of the core elements compared to flat file submission. Health care organizations that submit electronic data to immunization information systems should be aware that the technical decision to use the Health Level 7 format, particularly if real-time data exchange is employed, can result in more timely and accurate data. This will assist clinicians in adhering to the Advisory Committee on Immunization Practices schedule and reducing over-immunization.

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

PubMed

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

2014-01-01

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

Chronic disease management systems registries in rural health care.

PubMed

Skinner, Anne; Fraser-Maginn, Roslyn; Mueller, Keith J

2006-05-01

Health care quality is being addressed from a variety of policy perspectives. The 2001 Institute of Medicine report, Crossing the Quality Chasm, calls for sweeping action involving a five-part strategy for change in the U.S. health care system. This agenda for change includes use of evidence-based approaches to address common conditions, the majority of which are chronic. A Chronic Disease Management System (CDMS), or registry, is a tool that helps providers efficiently collect and analyze patient information to promote quality care for the rural population. CDMSs can provide a technological entry point for the impending use of Electronic Medical Records. A CDMS is a patient-centered electronic database tool that helps providers diagnose, treat, and manage chronic diseases. The purpose of this brief is to discuss the different types of CDMSs used by a sample of 14 state organizations and 19 local rural clinics in Maine, Nebraska, New Mexico, South Carolina, Washington, and Wisconsin. As part of a larger study examining the challenges and innovations in implementing disease management programs in rural areas, we conducted interviews with national, state, and local contacts. During interviews, respondents helped us understand the usefulness and functionalities of commonly used CDMSs in rural facilities. Our focus was on the use of CDMSs in the management of diabetes, a disease prevalent in rural populations. (1) CDMSs are readily available to rural clinics and are being implemented and maintained by clinic staff with minimal expenditures for technology. (2) Use of a standardized system in a collaborative helps provide data comparisons and share costs involved with technical assistance services across the group.

77 FR 52745 - Leveraging Registries With Medical Device Data for Postmarket Surveillance and Evidence Appraisal...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-30

... the Total Product Life Cycle AGENCY: Food and Drug Administration, HHS. ACTION: Notice of public... Evidence Appraisal Throughout the Total Product Life Cycle.'' The topic to be discussed is best practices...-cycle. For these reasons, FDA's Center for Devices and Radiological Health (CDRH) uses registries to...

Patient-reported outcome measures in arthroplasty registries

PubMed Central

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

2016-01-01

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 use of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

Effects of automated immunization registry reporting via an electronic health record deployed in community practice settings.

PubMed

Merrill, J; Phillips, A; Keeling, J; Kaushal, R; Senathirajah, Y

2013-01-01

Among the expected benefits of electronic health records (EHRs) is increased reporting of public health information, such as immunization status. State and local immunization registries aid control of vaccine-preventable diseases and help offset fragmentation in healthcare, but reporting is often slow and incomplete. The Primary Care Information Project (PCIP), an initiative of the NYC Department of Health and Mental Hygiene, has implemented EHRs with immunization reporting capability in community settings. To evaluate the effect of automated reporting via an EHR on use and efficiency of reporting to the NY Citywide Immunization Registry, we conducted a secondary analysis of 1.7 million de-identified records submitted between January 2007 and June 2011 by 217 primary care practices enrolled in PCIP, pre and post launch of automated reporting via an EHR. We examined differences in records submitted per day, lag time, and documentation of eligibility for subsidized vaccines. Mean submissions per day did not change. Automated submissions of new and historical records increased by 18% and 98% respectively. Submissions within 14 days increased from 84% to 87%, and within 2 days increased from 60% to 77%. Median lag time decreased from 13 to 10 days. Documentation of eligibility decreased. Results are significant at p<0.001. Significant improvements in registry use and efficiency of reporting were found after launch of automated reporting via an EHR. A decrease in eligibility documentation was attributed to EHR workflow. The limitations to comprehensive evaluation found in these data, which were extracted from a registry initiated prior to widespread EHR implementation suggests that reliable evaluation of immunization reporting via the EHR may require modifications to legacy registry databases.

SLAC Occupational Health Center

Science.gov Websites

Images ESH Home > SLAC Occupational Health Center SLAC Occupational Health Center Medical Emergency After Hours Care Services at SLAC Wellness Programs SLAC Occupational Health Center Monday - Friday 8:00 nearest emergency department to SLAC is the Stanford Health Care Emergency Department, open 24/7, located

Influences on participant reporting in the World Health Organisation drugs exposure pregnancy registry; a qualitative study.

PubMed

Allen, Elizabeth N; Gomes, Melba; Yevoo, Lucy; Egesah, Omar; Clerk, Christine; Byamugisha, Josaphat; Mbonye, Anthony; Were, Edwin; Mehta, Ushma; Atuyambe, Lynn M

2014-10-31

The World Health Organisation has designed a pregnancy registry to investigate the effect of maternal drug use on pregnancy outcomes in resource-limited settings. In this sentinel surveillance system, detailed health and drug use data are prospectively collected from the first antenatal clinic visit until delivery. Over and above other clinical records, the registry relies on accurate participant reports about the drugs they use. Qualitative methods were incorporated into a pilot registry study during 2010 and 2011 to examine barriers to women reporting these drugs and other exposures at antenatal clinics, and how they might be overcome. Twenty-seven focus group discussions were conducted in Ghana, Kenya and Uganda with a total of 208 women either enrolled in the registry or from its source communities. A question guide was designed to uncover the types of exposure data under- or inaccurately reported at antenatal clinics, the underlying reasons, and how women prefer to be asked questions. Transcripts were analysed thematically. Women said it was important for them to report everything they had used during pregnancy. However, they expressed reservations about revealing their consumption of traditional, over-the-counter medicines and alcohol to antenatal staff because of anticipated negative reactions. Some enrolled participants' improved relationship with registry staff facilitated information sharing and the registry tools helped overcome problems with recall and naming of medicines. Decisions about where women sought care, which influenced medicines used and antenatal clinic attendance, were influenced by pressure within and outside of the formal healthcare system to conform to conflicting behaviours. Conversations also reflected women's responsibilities for producing a healthy baby. Women in this study commonly take traditional medicines in pregnancy, and to a lesser extent over-the-counter medicines and alcohol. The World Health Organisation pregnancy registry

[Survey on computerized immunization registries in Italy].

PubMed

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

2008-01-01

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

Ten years and 100,000 participants later: occupational and other factors influencing participation in US Gulf War health registries.

PubMed

Smith, Tyler C; Smith, Besa; Ryan, Margaret A K; Gray, Gregory C; Hooper, Tomoko I; Heller, Jack M; Dalager, Nancy A; Kang, Han K; Gackstetter, Gary D

2002-08-01

For more than a decade after the Gulf War, there has been concern that wartime exposures have resulted in significant morbidity among Gulf War veterans. After the end of the war, the Department of Veterans Affairs (VA) and the Department of Defense (DoD) initiated health registries to provide systematic clinical evaluations of Gulf War veterans who chose to participate. By September 1999, there were 32,876 participants in the DoD Comprehensive Clinical Evaluation Program and 70,385 participants in the VA Gulf War Registry Health Examination Program. We identified demographic and military service factors, as well as potential war-related exposures associated with subsequent registry participation after 10 years of observation. Veterans potentially exposed to oil well fire smoke, those near Khamisiyah, Reserve and National Guard, Army veterans, and veterans in the theater of operations during intense combat periods were most likely to elect to participate in a registry. These findings support the hypothesis that certain occupational factors and wartime exposures may influence subsequent health care-seeking behavior.

Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data*. An Agile Framework.

PubMed

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

2017-06-14

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

Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data: An Agile Framework

PubMed Central

Kannan, V; Fish, JS; Mutz, JM; Carrington, AR; Lai, K; Davis, LS; Youngblood, JE; Rauschuber, MR; Flores, KA; Sara, EJ; Bhat, DG; Willett, DL

2017-01-01

Summary Background 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. Objective 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. Methods We adopted as guiding principles to (a) capture data as a by product 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

Review of Non-Respiratory, Non-Cancer Physical Health Conditions from Exposure to the World Trade Center Disaster

PubMed Central

Gargano, Lisa M.; Mantilla, Kimberly; Fairclough, Monique; Yu, Shengchao; Brackbill, Robert M.

2018-01-01

After the World Trade Center attacks on 11 September 2001 (9/11), multiple cohorts were developed to monitor the health outcomes of exposure. Respiratory and cancer effects have been covered at length. This current study sought to review the literature on other physical conditions associated with 9/11-exposure. Researchers searched seven databases for literature published in English from 2002 to October 2017, coded, and included articles for health condition outcome, population, 9/11-exposures, and comorbidity. Of the 322 titles and abstracts screened, 30 studies met inclusion criteria, and of these, 28 were from three cohorts: the World Trade Center Health Registry, Fire Department of New York, and World Trade Center Health Consortium. Most studies focused on rescue and recovery workers. While many of the findings were consistent across different populations and supported by objective measures, some of the less studied conditions need additional research to substantiate current findings. In the 16 years after 9/11, longitudinal cohorts have been essential in investigating the health consequences of 9/11-exposure. Longitudinal studies will be vital in furthering our understanding of these emerging conditions, as well as treatment effectiveness. PMID:29401643

Integration of site-specific health information: Agency for Toxic Substances and Disease Registry health assessments

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

Lesperance, A.M.; Siegel, M.R.

The Agency for Toxic Substances and Disease Registry is required to conduct a health assessment of any site that is listed on or proposed for the US Environmental Protection Agency's National Priorities List. Sixteen US Department of Energy (DOE) sites currently fall into this category. Health assessments contain a qualitative description of impacts to public health and the environment from hazardous waste sites, as well as recommendations for actions to mitigate or eliminate risk. Because these recommendations may have major impacts on compliance activities at DOE facilities, the health assessments are an important source of information for the monitoring activitiesmore » of DOE's Office of Environmental Compliance (OEC). This report provides an overview of the activities involved in preparing the health assessment, its role in environmental management, and its key elements.« less

Objectives and Design of the Russian Acute Coronary Syndrome Registry (RusACSR).

PubMed

Gridnev, Vladimir I; Kiselev, Anton R; Posnenkova, Olga M; Popova, Yulia V; Dmitriev, Viktor A; Prokhorov, Mikhail D; Dovgalevsky, Pavel Ya; Oschepkova, Elena V

2016-01-01

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. © 2015 Wiley Periodicals, Inc.

Harnessing electronic healthcare data for wound care research: Standards for reporting observational registry data obtained directly from electronic health records.

PubMed

Fife, Caroline E; Eckert, Kristen A

2017-04-01

The United States Food and Drug Administration will consider the expansion of coverage indications for some drugs and devices based on real-world data. Real-world data accrual in patient registries has historically been via manual data entry from the medical chart at a time distant from patient care, which is fraught with systematic error. The efficient automated transmission of data directly from electronic health records is replacing this labor-intensive paradigm. However, real-world data collection is unfamiliar. The potential sources of bias arising from the source of data and data accrual, documentation, and aggregation have not been well defined. Furthermore, the technological aspects of data acquisition and transmission are less transparent. We explore opportunities for harnessing direct-from-electronic health record registry reporting and propose the ABCs of Registries (Analysis of Bias Criteria of Registries), which are an evaluation framework for publications to minimize potential bias of real-world data obtained directly from an electronic health record method. These standards are based on a point-of-care data documentation process using a common definitional framework and data dictionaries. By way of example, we describe a wound registry obtained directly from electronic health records. This qualified clinical data registry minimizes bias by ensuring complete and accurate point-of-care data capture, standardizes usual care linked to quality reporting, and prevents post-hoc vetting of outcomes. The resulting data are of high quality and integrity and can be used for comparative effectiveness research in wound care. In this way, the effort needed to succeed with the Quality Payment Program is leveraged to obtain the real-world data needed for comparative effectiveness research. © 2017 by the Wound Healing Society.

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

PubMed

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

2013-01-01

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

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

PubMed Central

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

2017-01-01

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

Agency for Toxic Substances and Disease Registry

MedlinePlus

... fact sheet. Hexachlorobenzene Learn important information about Hexachlorobenzene. ALS Registry 7th Anniversary Read how the Registry has been working to better understand ALS for 7 years now. Protect the Health of ...

The Danish Schizophrenia Registry.

PubMed

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

2016-01-01

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

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

PubMed

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

2012-08-01

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

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

PubMed

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

2015-12-01

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

[Taxonomy and definition of clinical registries].

PubMed

Costa, Giuseppe

2015-09-01

In order to assess the needs of knowledge about surveillance and registries in Italy and to prepare a proposal for the advancement of monitoring and recording capacity, a working group led by the Italian Association of Epidemiology and composed by the University of Turin, the Institute of Health and Agenas, carried out a survey of definitions and approaches used in public health and consulted the main Italian experts in surveillance and registries. Some of the reflections developed in this project are presented, to assess to which extent they are adaptable to the prospects the program PRIER aims to. Different aspects of the issue are analyzed: from the frame work necessary to identify information needs and how to improve the ability to measure and types of definitions and taxonomies of the registers, to the implications of the choices about what to include in registries on regulation of the instruments and investment priorities for new registries and surveillance.

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

PubMed Central

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

2013-01-01

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

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

PubMed

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

2016-10-01

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

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2010 CFR

2010-10-01

... 42 Public Health 5 2010-10-01 2010-10-01 false Registry of nurse aides. 483.156 Section 483.156... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2011 CFR

2011-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2011-10-01 2011-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2014 CFR

2014-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2014-10-01 2014-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2012 CFR

2012-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2012-10-01 2012-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2013 CFR

2013-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2013-10-01 2013-10-01 false Registry of nurse aides. 483.156 Section 483.156...

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

PubMed

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

2014-06-07

Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data

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

PubMed Central

2014-01-01

Background Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. Methods We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. Results We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. Conclusions We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a

Establishing of National Birth Defects Registry in Thailand.

PubMed

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

2014-06-01

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

The Danish Schizophrenia Registry

PubMed Central

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

2016-01-01

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

Iliac Arteries: How Registries Can Help Improve Outcomes

PubMed Central

Tapping, Charles Ross; Uberoi, Raman

2014-01-01

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

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

PubMed

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

2018-02-01

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

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

PubMed

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

2018-01-25

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

School-Based Health Centers

MedlinePlus

... care group, such as a community health center, hospital, or health department. A few are run by the school district itself. Centers often get money from charities and the government so they can give care ...

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

PubMed

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

2011-01-01

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

Liver transplant center performance profiling: 2005-2011 reports of the Scientific Registry for Transplant Recipients.

PubMed

Kettelhut, Valeriya V; Nayar, Preethy

2013-06-01

CONTEXT-Transplant center performance profiling provides important information for various concerned parties. Comparing a transplant center's performance against the performance of the best-in-class centers may help in understanding the performance thresholds for the underperforming centers. OBJECTIVES-(1) To identify and describe "Centers for Medicare and Medicaid Services (CMS)-red-flag" performers and the "best-in-class" performers and (2) to examine the relationships between a center's performance profile and outcomes such as 1-year observed mortality, 1-month observed mortality, 1-year risk-adjusted mortality, and volume. METHODS-The data for analysis was obtained from the published reports on the Scientific Registry for Transplant Recipients (SRTR) website for adult liver transplant programs compiled for the rolling 2 1/2-year cohorts of patients and included 7 cohorts of liver transplant recipients in the study from January through July 1, 2002, through December 31, 2010. We defined 4 performance profiles: CMS-red-flag, lower-than-expected, higher-than-expected, and best-in-class performers. RESULTS-The current SRTR methods classify approximately 7% of the adult liver centers as CMS-red-flag performers and 6% of the centers as best-in-class performers in every reported period. Neither of the low-volume centers (<30 liver transplants per 2 1/2-year cohort) was profiled as CMS-red-flag until the 2010 reporting period. The transplant center's profile was significantly associated with the 1-year and 1-month observed mortality rates in every reported cohort (P< .001). CONCLUSION-The CMS-red-flag profile can be characterized with the following: (1) the highest observed 1-year mortality, (2) the highest observed 1-month mortality, (3) a very large difference between the observed and adjusted mortality rates, and (4) the center volume greater than 30 liver transplants per 2 1/2-year cohort. The SRTR methods are not sensitive for performance profiling in the centers

The design of Radiation Accident Registry.

PubMed

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

2011-03-01

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

Use of health plan combined with registry data to predict clinical trial recruitment.

PubMed

Curtis, Jeffrey R; Wright, Nicole C; Xie, Fenglong; Chen, Lang; Zhang, Jie; Saag, Kenneth G; Bharat, Aseem; Kremer, Joel; Cofield, Stacey; Winthrop, Kevin; Delzell, Elizabeth

2014-02-01

Large pragmatic clinical trials (PCTs) are increasingly used to conduct comparative effectiveness research. In the context of planning a safety PCT of the live herpes zoster vaccine in rheumatoid arthritis (RA) patients aged ≥ 50 years receiving anti-tumor necrosis factor (TNF) therapy, we evaluated the use of health plan combined with registry data to assess the feasibility of recruiting the 4000 patients needed for the trial and to facilitate site selection. Using national US data from Medicare, we identified older RA patients who received anti-TNF therapy in the last quarter of 2009. Extrapolations were made from the Medicare patient population to younger patients and those with other types of insurance using the Consortium of Rheumatology Researchers of North America (CORRONA) disease registry. Patients' treating rheumatologists were grouped into practices and sorted by size from the greatest to the least number of eligible patients. Approximately 50,000 RA patients receiving anti-TNF therapy were identified in the Medicare data, distributed across 1980 physician practices. After augmenting Medicare data with information from CORRONA and extrapolating to younger patients and those with other types of insurance, more than 12,000 potentially eligible study subjects were identified from the 50 largest rheumatology practices. Health plan and registry databases appear useful to assess feasibility of large pragmatic trials and to assist in selection of recruitment sites with the greatest number of potentially eligible patients. This novel approach is applicable to trials with simple inclusion/exclusion criteria that can be readily assessed in these data sources.

Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012.

PubMed

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

2015-06-01

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.

Australia and New Zealand Dialysis and Transplant Registry.

PubMed

McDonald, Stephen P

2015-06-01

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

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

PubMed

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

2015-09-01

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

Cohort Profile: The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry)

PubMed Central

Gatz, Margaret; Harris, Jennifer R; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L; Snieder, Harold; Spiro, Avron; Butler, David A

2015-01-01

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. PMID:25183748

42 CFR 124.515 - Compliance alternative for community health centers, migrant health centers and certain National...

Code of Federal Regulations, 2010 CFR

2010-10-01

... 42 Public Health 1 2010-10-01 2010-10-01 false Compliance alternative for community health centers, migrant health centers and certain National Health Service Corps sites. 124.515 Section 124.515 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH RESOURCES DEVELOPMENT...

Heart disease among adults exposed to the September 11, 2001 World Trade Center disaster: results from the World Trade Center Health Registry.

PubMed

Jordan, Hannah T; Miller-Archie, Sara A; Cone, James E; Morabia, Alfredo; Stellman, Steven D

2011-12-01

To examine associations between 9/11-related exposures, posttraumatic stress disorder (PTSD), and subsequent development of heart disease (HD). We prospectively followed 39,324 WTC Health Registry participants aged ≥18 on 9/11 for an average of 2.9 years. HD was defined as self-reported physician-diagnosed angina, heart attack, and/or other HD reported between study enrollment (2003-2004) and a follow-up survey (2006-2008) in enrollees without previous HD. A PTSD Checklist (PCL) score ≥44 was considered PTSD. We calculated adjusted hazard ratios (AHR) and 95% confidence intervals (CI) to examine relationships between 9/11-related exposures and HD. We identified 1162 HD cases (381 women, 781 men). In women, intense dust cloud exposure was significantly associated with HD (AHR 1.28, 95% CI 1.02-1.61). Injury on 9/11 was significantly associated with HD in women (AHR 1.46, 95% CI 1.19-1.79) and in men (AHR 1.33, 95% CI 1.15-1.53). Participants with PTSD at enrollment had an elevated HD risk (AHR 1.68, 95% CI 1.33-2.12 in women, AHR 1.62, 95% CI 1.34-1.96 in men). A dose-response relationship was observed between PCL score and HD risk. This exploratory study suggests that exposure to the WTC dust cloud, injury on 9/11 and 9/11-related PTSD may be risk factors for HD. Copyright © 2011 Elsevier Inc. All rights reserved.

Occupational Disease Registries-Characteristics and Experiences.

PubMed

Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

2017-06-01

Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.

PubMed

Weiner, Michael W; Nosheny, Rachel; Camacho, Monica; Truran-Sacrey, Diana; Mackin, R Scott; Flenniken, Derek; Ulbricht, Aaron; Insel, Philip; Finley, Shannon; Fockler, Juliet; Veitch, Dallas

2018-05-08

Recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies and clinical trials limit the development of new treatments. Widespread Internet use allows data capture from participants in an unsupervised setting. The Brain Health Registry, a website and online registry, collects data from participants and their study partners. The Brain Health Registry obtains self and study partner report questionnaires and neuropsychological data, including the Cogstate Brief Battery, Lumos Labs Neurocognitive Performance Test, and MemTrax Memory Test. Participants provide informed consent before participation. Baseline and longitudinal data were obtained from nearly 57,000 and 28,000 participants, respectively. Over 18,800 participants were referred to, and nearly 1800 were enrolled in, clinical Alzheimer's disease and aging studies, including five observational studies and seven intervention trials. Online assessments of participants and study partners provide useful information at relatively low cost for neuroscience studies and clinical trials and may ultimately be used in routine clinical practice. Copyright © 2018 the Alzheimer's Association. All rights reserved.

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

PubMed Central

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

2011-01-01

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

Issues faced by community health centers.

PubMed

Grover, Jane

2009-05-01

Federally qualified health centers face numerous issues with regard to marketplace competition, staffing, and reimbursement streams that assure financial viability. Positioning the dental department of a health center to a high community profile strengthens the health center in professional educational development leading to a pipeline of workforce members, effective dental directors, and innovative fund-raising. A new dental team member developed by the American Dental Association can be utilized in health centers to make all traditional auxiliaries more productive.

Functional requirements regarding medical registries--preliminary results.

PubMed

Oberbichler, Stefan; Hörbst, Alexander

2013-01-01

The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

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

PubMed

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

2016-07-01

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

A Dutch Nationwide Bariatric Quality Registry: DATO.

PubMed

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

2017-12-22

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

The Department of Defense's Persian Gulf War registry year 2000: an examination of veterans' health status.

PubMed

Stuart, John A; Murray, Kelly M; Ursano, Robert J; Wright, Kathleen M

2002-02-01

This study examined the health status of 46,633 Persian Gulf War theater veterans who received full clinical evaluations in the Department of Defense's Gulf War Comprehensive Clinical Evaluation Program (CCEP) as of spring 2000. Clinical data analyzed included demographic information, 15 health symptoms, 19 wartime exposures, and primary and secondary physician-determined medical diagnoses based on International Classification of Diseases, 9th Revision, Clinical Modification, criteria. Findings and discussions are arrayed, by gender, with comparative 1996 data from the Department of Veterans Affairs Health Examination Registry Program. Many veterans reported fewer physical symptoms now than during the time of the Gulf War. Many endorsed symptoms of joint pain, fatigue, weight change, and sleep disturbances. Most reported exposure to diesel fuel and the nerve agent antidote pyridostigmine bromide; far fewer female veterans reported combat involvement. The most frequent primary or secondary diagnosed medical conditions were musculoskeletal/connective tissue diseases, ill-defined conditions, and mental disorders. Female veterans were diagnosed more frequently with mental disorders. Symptom endorsement and diagnosis rates between the CCEP and the Department of Veterans Affairs registry were not dissimilar. Overall, the self-reported general health of veterans with symptoms was much poorer (females had higher rates of "fair to poor" health than males) than that of veterans with no reported symptoms.

Outpatient presentations to burn centers: data from the Burns Registry of Australia and New Zealand outpatient pilot project.

PubMed

Gabbe, Belinda J; Watterson, Dina M; Singer, Yvonne; Darton, Anne

2015-05-01

Most studies about burn injury focus on admitted cases. To compare outpatient and inpatient presentations at burn centers in Australia to inform the establishment of a repository for outpatient burn injury. Data for sequential outpatient presentations were collected at seven burn centers in Australia between December 2010 and May 2011 and compared with inpatient admissions from these centers recorded by the Burns Registry of Australia and New Zealand for the corresponding period. There were 788 outpatient and 360 inpatient presentations. Pediatric outpatients included more children <3 years of age (64% vs 33%), scald (52% vs 35%) and contact burns (39% vs 24%). Adult outpatients included fewer males (58% vs 73%) and intentional injuries (3.3% vs 10%), and more scald (46% vs 30%) and contact burns (24% vs 13%). All pediatric, and 98% of adult, outpatient presentations involved a %TBSA<10. The pattern of outpatient presentations was consistent between centers. Outpatient presentations outnumbered inpatient admissions by 2.2:1. The pattern of outpatient burns presenting to burn centers differed to inpatient admission data, particularly with respect to etiology and burn severity, highlighting the importance of the need for outpatient data to enhance burn injury surveillance and inform prevention. Copyright © 2014 Elsevier Ltd and ISBI. All rights reserved.

How complete are immunization registries? The Philadelphia story.

PubMed

Kolasa, Maureen S; Chilkatowsky, Andrew P; Clarke, Kevin R; Lutz, James P

2006-01-01

To assess accuracy and completeness of Philadelphia, Pa, registry data among children served by providers in areas at risk for underimmunization. Philadelphia's Department of Public Health selected a simple random sample of 45 children age 19-35 months (or all children age 19-35 months if there were <45 children in the practice) from each of 30 private practices receiving government-funded vaccine and located in zip codes where children are at risk for underimmunization. Chart and registry data were compared with determine the proportion of children missing from the registry and assess differences in immunization coverage. Of 620 children reviewed, 567 (92%) were in the registry. Significant differences (P < .05) were observed in immunization coverage for 4 diphtheria-tetanus-acellular pertussis vaccinations, 3 polio vaccinations, 1 measles-mumps-rubella vaccination, and 3 Haemophilus influenzae type b vaccinations between the chart (80% coverage) and registry (62% coverage). Providers submitting electronic medical records or directly transferring electronic data to the registry had significantly more children in the registry and higher registry-reported immunization coverage than those whose data were entered from billing records or log forms. All practice types experienced difficulties in transferring complete data to the registry. Although 92% of study children were in the registry, immunization coverage was significantly lower when registry data were compared with chart data. Because electronic medical records and direct electronic data transfer resulted in more complete registry data, these methods should be encouraged in linking providers with immunization registries.

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

PubMed

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

2018-07-01

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

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

PubMed Central

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

2016-01-01

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

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

PubMed

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

2012-05-01

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

Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries.

PubMed

Solomon, Daniel H; Shadick, Nancy A; Weinblatt, Michael E; Frits, Michelle; Iannaccone, Christine; Zak, Agnes; Korzenik, Joshua R

2017-04-17

The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. We conducted similar surveys in two disease-based registries based at one academic medical center in the US. One group of patients with rheumatoid arthritis (RA) had been enrolled in a registry, and we focused on retention factors. In a second group of patients with inflammatory bowel disease (IBD) recently enrolled or considering enrollment, we examined factors that would influence their enrollment and willingness to answer frequent questionnaires and give biospecimens. The surveys were analyzed using descriptive statistics and the two cohorts were compared using nonparametric and chi-square tests. We received 150 (50%) completed surveys from RA and 169 (63%) from IBD patients. Mean age of subjects was 62 years in RA and 43 in IBD with more women respondents with RA (83%) than IBD (62%). The two groups described very similar factors as the top three motivations for participation: desire to help others, desire to improve care of own disease, and ease of volunteering. Preferred methods of surveying included mail, e-mail, but telephone was not favored; age was an important correlate of this preference. Respondents preferred surveys either every 1-3 months (28.7% RA and 55.0% IBD) or every 4-6 months (50.7% RA and 29.0% IBD). They differed in the preference for payment for answering surveys with 68.0% with RA answering that no payment was necessary but only 36.1% with IBD felt similarly. Patients engaged in clinical registries demonstrate a high level of commitment to improve care and many report a willingness to answer questions relatively frequently.

Reciprocating living kidney donor generosity: tax credits, health insurance and an outcomes registry

PubMed Central

Joshi, Shivam; Joshi, Sheela; Kupin, Warren

2016-01-01

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 personally bear a significant financial responsibility due to lost work wages and travel expenses. In order to alleviate this economic burden for donors, we advocate for the consideration of tax credits, lifelong health insurance coverage, and an outcomes registry as societal reciprocity to reward their altruistic act of kidney donation. PMID:26798480

Meta-Analysis of Survival Curve Data Using Distributed Health Data Networks: Application to Hip Arthroplasty Studies of the International Consortium of Orthopaedic Registries

ERIC Educational Resources Information Center

Cafri, Guy; Banerjee, Samprit; Sedrakyan, Art; Paxton, Liz; Furnes, Ove; Graves, Stephen; Marinac-Dabic, Danica

2015-01-01

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…

Result Publication of Chinese Trials in World Health Organization Primary Registries

PubMed Central

Xuemei, Liu; Youping, Li; Senlin, Yin; Shangqi, Song

2010-01-01

Background Result publication is the key step to improve the transparency of clinical trials. Objective To investigate the result publication rate of Chinese trials registered in World Health Organization (WHO) primary registries. Method We searched 11 WHO primary registries for Chinese trials records. The progress of each trial was analyzed. We searched for the full texts of result publications cited in the registration records. For completed trials without citations, we searched PubMed, Embase, Chinese Biomedical Literature Database (Chinese), China Knowledge Resource Integrated Database, and Chinese Science and Technology Periodicals Database for result publications. The search was conducted on July 14, 2009. We also called the investigators of completed trials to ask about results publication. Results We identified 1294 Chinese trials records (428 in ChiCTR,743 in clinicaltrials.gov,55 in ISRCTN, 21 in ACTRN). A total of 443 trials had been completed. The publication rate of the Chinese trials in WHO primary registries is 35.2%(156/443).The publication rate of Chinese trials in clinicaltrials.gov, ChiCTR, ISRCTN, and ACRTN was 36.5% (53/145), 36.3% (89/245), 26.0%(9/44), and 55.6%(5/9), respectively. The publication rate of trials sponsored by industry(23.8%) was lower than that of sponsored by central and local government(31.7%), hospital(35.1%), and universities (40.7%). The publication rate for randomized trials was higher than that of cohort study and case-control study (33.2% versus 16.7%, 22.2%). The publication rate for interventional studies and observational studies was similar(33.4% versus 33.3%). Conclusion The publication rate of the registered Chinese trials was low, with no significant difference between ChiCTR and clinicaltrials.gov. An effective mechanism is needed to promote publication of results for registered trials in China. PMID:20856888

The CERTAIN Registry: a novel, web-based registry and research platform for pediatric renal transplantation in Europe.

PubMed

Plotnicki, L; Kohl, C D; Höcker, B; Krupka, K; Rahmel, A; Pape, L; Hoyer, P; Marks, S D; Webb, N J A; Söylemezoglu, O; Topaloglu, R; Szabo, A J; Seeman, T; Marlies Cornelissen, E A; Knops, N; Grenda, R; Tönshoff, B

2013-05-01

The results of pediatric renal transplantation have improved markedly in the last decade. However, a number of relevant clinical problems remain, such as organ damage caused by chronic rejection, long-term toxicity of immunosuppressive therapy, difficulty in developing tolerance-inducing protocols, secondary cardiovascular comorbidity, post-transplantation lymphoproliferative disease, suboptimal longitudinal growth, quality of life, adherence to immunosuppressive medication, and structured transition programs to adult care. These unmet clinical needs require intense collaborative and interdisciplinary clinical research. We recently founded the Cooperative European Paediatric Renal TransplAnt INitiative (CERTAIN; www.certain-registry.eu) as a research network and platform built on a novel, web-based registry. The registry's dataset provides essential information on generic kidney transplantation-related topics and also captures pediatric-specific topics, such as growth, physical and psychosocial development, and adherence. Due to its flexibility the system can be used as follows: (1) as a registry capturing a minimal or an extended dataset; (2) as a center and/or country-specific transplantation database; or (3) as a patient-specific electronic transplantation chart. The data can be exported directly from the CERTAIN web application into statistical software packages for scientific analyses. The rights regarding data ownership, evaluation, and publications are regulated in the registry's rules of procedure. Data quality is ensured by automatic software validation and a manual data review process. To avoid redundant data entry, CERTAIN has established interfaces for data change with Eurotransplant, the Collaborative Transplant Study (CTS), and the registry of the European Society of Pediatric Nephrology (ESPN) and European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) (ESPN/ERA-EDTA registry). CERTAIN fulfils all regulatory and ethical

Rethinking the Health Center: Assessing Your Health Center and Setting Goals.

ERIC Educational Resources Information Center

McMillan, Nancy S.

2001-01-01

Camp health center management begins with assessing the population served, camp areas impacted, and the contract of care with parents. That information is used to plan the size of the center; its location in the camp; the type of equipment; and considerations such as medication management, infectious disease control, size of in- and out-patient…

Impact of clinical registries on quality of patient care and health outcomes: protocol for a systematic review.

PubMed

Hoque, Dewan Md Emdadul; Kumari, Varuni; Ruseckaite, Rasa; Romero, Lorena; Evans, Sue M

2016-04-26

Many developed countries have regional and national clinical registries aimed at improving health outcomes of patients diagnosed with particular diseases or cared for in particular healthcare settings. Clinical quality registries (CQRs) are clinical registries established with the purpose of monitoring quality of care and providing feedback to improve health outcomes. The aim of this systematic review is to understand the impact of CQRs on (1) mortality/survival; (2) measures of outcome that reflect a process or outcome of healthcare; (3) healthcare utilisation and (4) costs. The PRISMA-P methodology, checklist and standard strategy using predefined inclusion and exclusion criteria and structured data abstraction tools will be followed. A search of the electronic databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and CINAHL will be undertaken, in addition to Google Scholar and grey literature, to identify studies in English covering the period January 1980 to December 2014. Case-control, cohort, randomised controlled trials and controlled clinical trials which describe the registry as an intervention will be eligible for inclusion. Narrative synthesis of study findings will be conducted, guided by a conceptual framework developed to analyse the outcome measure of the registry using defined criteria. If sufficient studies are identified with a similar outcome of interest and measure using the same comparator and time of interval, results will be pooled for random-effects meta-analysis. Test for heterogeneity and sensitivity analysis will be conducted. To identify reporting bias, forest plots and funnel plots will be created and, if required, Egger's test will be conducted. Ethical approval is not required as primary data will not be collected. Review results will be published as a part of thesis, peer-reviewed journal and conferences. CRD42015017319. Published by the BMJ Publishing Group Limited. For permission to use (where not

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

PubMed

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

2012-12-01

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

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

PubMed

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

2015-01-01

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

Ethical aspects of registry-based research in the Nordic countries

PubMed Central

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

2015-01-01

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

Toxic substances registry system: Index of material safety data sheets

NASA Technical Reports Server (NTRS)

1993-01-01

The Material Safety Data Sheets (MSDS's) listed in this index reflect product inventories and associated MSDS's which were submitted to the Toxic Substances Registry database maintained by the Base Operations Contractor at the Kennedy Space Center. The purpose of this index is to provide KSC government, contractor, and tenant organizations a means to access information on the hazards associated with these chemicals. The Toxic Substance Registry Service (TSRS) was established to manage information dealing with the storage and use of toxic and otherwise hazardous materials at KSC. As a part of this service, the BOC Environmental Health Services maintains a central repository of MSDS's which were provided to TSRS. The data on the TSRS are obtained from NASA, contractor, and tenant organizations who use or store hazardous materials at KSC. It is the responsibility of these organizations to conduct inventories, obtain MSDS's, distribute Hazard Communication information to their employees, and otherwise implement compliance with appropriate Federal, State, and NASA Hazard Communication and Worker Right-to-Know regulations and policies.

Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

PubMed Central

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

2014-01-01

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

Impact of a Primary Care CKD Registry in a US Public Safety-Net Health Care Delivery System: A Pragmatic Randomized Trial.

PubMed

Tuot, Delphine S; McCulloch, Charles E; Velasquez, Alexandra; Schillinger, Dean; Hsu, Chi-Yuan; Handley, Margaret; Powe, Neil R

2018-04-23

Many individuals with chronic kidney disease (CKD) do not receive guideline-concordant care. We examined the impact of a team-based primary care CKD registry on clinical measures and processes of care among patients with CKD cared for in a public safety-net health care delivery system. Pragmatic trial of a CKD registry versus a usual-care registry for 1 year. Primary care providers (PCPs) and their patients with CKD in a safety-net primary care setting in San Francisco. The CKD registry identified at point of care all patients with CKD, those with blood pressure (BP)>140/90mmHg, those without angiotensin-converting enzyme (ACE) inhibitor/angiotensin receptor blocker (ARB) prescription, and those without albuminuria quantification in the past year. It also provided quarterly feedback pertinent to these metrics to promote "outreach" to patients with CKD. The usual-care registry provided point-of-care cancer screening and immunization data. Changes in systolic BP at 12 months (primary outcome), proportion of patients with BP control, prescription of ACE inhibitors/ARBs, quantification of albuminuria, severity of albuminuria, and estimated glomerular filtration rate. The patient population (n=746) had a mean age of 56.7±12.1 (standard deviation) years, was 53% women, and was diverse (8% non-Hispanic white, 35.7% black, 24.5% Hispanic, and 24.4% Asian). Randomization to the CKD registry (30 PCPs, 285 patients) versus the usual-care registry (49 PCPs, 461 patients) was associated with 2-fold greater odds of ACE inhibitor/ARB prescription (adjusted OR, 2.25; 95% CI, 1.45-3.49) and albuminuria quantification (adjusted OR, 2.44; 95% CI, 1.38-4.29) during the 1-year study period. Randomization to the CKD registry was not associated with changes in systolic BP, proportion of patients with uncontrolled BP, or degree of albuminuria or estimated glomerular filtration rate. Potential misclassification of CKD; missing baseline medication data; limited to study of a public safety

CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia.

PubMed

Venuthurupalli, Sree K; Hoy, Wendy E; Healy, Helen G; Cameron, Anne; Fassett, Robert G

2017-06-07

Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries. In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE]. The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.

Drake Chemical Workers' Health Registry: coping with community tension over toxic exposures.

PubMed Central

Leviton, L C; Marsh, G M; Talbott, E; Pavlock, D; Callahan, C

1991-01-01

BACKGROUND: Programs to communicate health risk information and to protect the health of groups exposed to toxic substances need to tailor interventions to the political, economic, and cultural situation of the at-risk group. In particular, such programs must often cope with exceptional community tension and conflict over these exposures. METHODS: This article uses interviews and written materials to document and describe the state of affairs that led up to community tension over an occupational exposure to a bladder carcinogen. The article describes the planning and design of a program to provide medical surveillance to workers, which also alleviated community concern. RESULTS: The Drake Chemical Workers' Health Registry coped successfully with community conflict and obtained a high participation rate. CONCLUSIONS: General recommendations include the following: avoid identification with extraneous agendas; know the community and maintain communication; and match the intervention to the evolution of the community conflict. PMID:2029036

Quality and Safety in Health Care, Part XXIX: The Transcatheter Valve Therapy Registry.

PubMed

Harolds, Jay A

2017-11-01

The American College of Cardiology, the Society of Thoracic Surgeons, and other organizations cooperated to form the Transcatheter Valve Therapy Registry. This registry studies information on the outcome of valve therapy device placement with a transcatheter approach. The companies that manufacture these devices can use the registry to meet the post-product sale surveillance requirements of the US Food and Drug Administration. There will also be linkage to the registry information from the Society of Thoracic Surgeons Adult Cardiac Surgery Database, which has information on open cardiac valve surgery.

Collateral non cardiac findings in clinical routine CT coronary angiography: results from a multi-center registry.

PubMed

La Grutta, Ludovico; Malagò, Roberto; Maffei, Erica; Barbiani, Camilla; Pezzato, Andrea; Martini, Chiara; Arcadi, Teresa; Clemente, Alberto; Mollet, Nico R; Zuccarelli, Alessandra; Krestin, Gabriel P; Lagalla, Roberto; Pozzi Mucelli, Roberto; Cademartiri, Filippo; Midiri, Massimo

2015-12-01

The aim of the study was to evaluate the prevalence of collateral findings detected in computed tomography coronary angiography (CTCA) in a multi-center registry. We performed a retrospective review of 4303 patients (2719 males, mean age 60.3 ± 10.2 years) undergoing 64-slice CTCA for suspected or known coronary artery disease (CAD) at various academic institutions between 01/2006 and 09/2010. Collateral findings were recorded and scored as: non-significant (no signs of relevant pathology, not necessary to be reported), significant (clear signs of pathology, mandatory to be reported), or major (remarkable pathology, mandatory to be reported and further investigated). We detected 6886 non-cardiac findings (1.6 non cardiac finding per patient). Considering all centers, only 865/4303 (20.1 %) patients were completely without any additional finding. Overall, 2095 (30.4 %) non-significant, 4486 (65.2 %) significant, and 305 (4.4 %) major findings were detected. Among major findings, primary lung cancer was reported in 21 cases. In every center, most prevalent significant findings were mediastinal lymph nodes >1 cm. In 256 patients, collateral findings were clinically more relevant than coexisting CAD and justified the symptoms of patients. The prevalence of significant and major collateral findings in CTCA is high. Radiologists should carefully evaluate the entire scan volume in each patient.

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

PubMed Central

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

1990-01-01

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

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

PubMed

Sivaramakrishnan, Gowri; Sridharan, Kannan

2016-06-01

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

Dementia registries around the globe and their applications: A systematic review.

PubMed

Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

2017-09-01

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

Examples of applied public health through the work of the Epidemic Intelligence Service officers at CDC's National Center for Environmental Health: 2006-2015.

PubMed

Carroll, Yulia I; Rashid, Fauzia A; Falk, Henry; Howley, Meredith M

2017-01-01

The Epidemic Intelligence Service officers (EISOs) at the National Center for Environmental Health (NCEH)/Agency for Toxic Substances and Disease Registry (ATSDR) respond to public health outbreaks, assist public health surveillance, and recommend public health actions. We summarize the breadth of work done by EISOs assigned to NCEH/ATSDR during 2006-2015. We used the Web of Science, Scopus, and PubMed databases to identify articles authored by the EISOs, number and types of epidemiologic assistance field investigations (Epi-Aids), and interviewed NCEH/ATSDR programs with EISO assignees. The largest number of NCEH/ATSDR EISO publications ( n = 61) and Epi-Aids ( n = 110) related to toxic chemicals (23 and 37, respectively), followed by natural disasters and those caused by humans (19 and 25, respectively), extreme temperature-related illness (9), and chronic diseases (8). The investigations raised awareness, identified risk factors and public health needs, and introduced better prevention and protection measures for human health. Through field investigations and other technical assistance, NCEH/ATSDR provided leadership and staff scientists to assist in the field, as well as knowledge transfer to local, state, territorial, and international health departments.

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

PubMed

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

2013-09-09

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

Utilization of Mental Health Services in School-Based Health Centers

ERIC Educational Resources Information Center

Bains, Ranbir M.; Cusson, Regina; White-Frese, Jesse; Walsh, Stephen

2017-01-01

Background: We summarize utilization patterns for mental health services in school-based health centers. Methods: Administrative data on school-based health center visits in New Haven, Connecticut were examined for the 2007-2009 school years. Relative frequencies of mental health visits by age were calculated as a percentage of all visits and were…

Characteristics of clinical trial websites: information distribution between ClinicalTrials.gov and 13 primary registries in the WHO registry network.

PubMed

Ogino, Daisuke; Takahashi, Kunihiko; Sato, Hajime

2014-11-05

It is well known that information about clinical trials is not easily accessible by the public. In Japan, clinical trial information can be accessed by the general public through online registries; however, many people find these registries difficult to use. To improve current clinical trial registries, we propose that combining them with clinical information phrased in lay terms would be beneficial to other interested professionals such as journalists and clinicians, as well as the general public. Therefore, this study aimed to examine the current pattern of distribution of clinical trial information from the primary World Health Organization (WHO) registries. Based on the results of this assessment, we then aimed to build and evaluate a prototype of the Japan Primary Registries Network (JPRN) portal that would be easily accessible to patients and the public, while still remaining useful for professionals. We assessed a total of 14 primary clinical trial registries listed on the WHO International Clinical Trials Registry Platform between January and February 2013. Website content was accessed and checked against a series of items that looked at usability, communication, design and accessibility of the sites. We excluded registries that were not active or were not on the approved WHO registry list at the time of our assessment. We also examined only the English versions of the websites as native-language registries may offer more functionality or different content than the English version of the same website. All registries examined had a function allowing users to search the registry data and that displayed the related information from the search, including the clinical trial registration data. However, few websites were found to be user-friendly, and there was little integration with social media. We confirmed that there are few websites providing useful clinical trial information to patients and their families. However, information gleaned from some of the more

Core outcome sets and trial registries.

PubMed

Clarke, Mike; Williamson, Paula

2015-05-14

Some reasons for registering trials might be considered as self-serving, such as satisfying the requirements of a journal in which the researchers wish to publish their eventual findings or publicising the trial to boost recruitment. Registry entries also help others, including systematic reviewers, to know about ongoing or unpublished studies and contribute to reducing research waste by making it clear what studies are ongoing. Other sources of research waste include inconsistency in outcome measurement across trials in the same area, missing data on important outcomes from some trials, and selective reporting of outcomes. One way to reduce this waste is through the use of core outcome sets: standardised sets of outcomes for research in specific areas of health and social care. These do not restrict the outcomes that will be measured, but provide the minimum to include if a trial is to be of the most use to potential users. We propose that trial registries, such as ISRCTN, encourage researchers to note their use of a core outcome set in their entry. This will help people searching for trials and those worried about selective reporting in closed trials. Trial registries can facilitate these efforts to make new trials as useful as possible and reduce waste. The outcomes section in the entry could prompt the researcher to consider using a core outcome set and facilitate the specification of that core outcome set and its component outcomes through linking to the original core outcome set. In doing this, registries will contribute to the global effort to ensure that trials answer important uncertainties, can be brought together in systematic reviews, and better serve their ultimate aim of improving health and well-being through improving health and social care.

Medical Waste Management in Community Health Centers.

PubMed

Tabrizi, Jafar Sadegh; Rezapour, Ramin; Saadati, Mohammad; Seifi, Samira; Amini, Behnam; Varmazyar, Farahnaz

2018-02-01

Non-standard management of medical waste leads to irreparable side effects. This issue is of double importance in health care centers in a city which are the most extensive system for providing Primary Health Care (PHC) across Iran cities. This study investigated the medical waste management standards observation in Tabriz community health care centers, northwestern Iran. In this triangulated cross-sectional study (qualitative-quantitative), data collecting tool was a valid checklist of waste management process developed based on Iranian medical waste management standards. The data were collected in 2015 through process observation and interviews with the health center's staff. The average rate of waste management standards observance in Tabriz community health centers, Tabriz, Iran was 29.8%. This case was 22.8% in dimension of management and training, 27.3% in separating and collecting, 31.2% in transport and temporary storage, and 42.9% in sterilization and disposal. Lack of principal separation of wastes, inappropriate collecting and disposal cycle of waste and disregarding safety tips (fertilizer device performance monitoring, microbial cultures and so on) were among the observed defects in health care centers supported by quantitative data. Medical waste management was not in a desirable situation in Tabriz community health centers. The expansion of community health centers in different regions and non-observance of standards could predispose to incidence the risks resulted from medical wastes. So it is necessary to adopt appropriate policies to promote waste management situation.

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

PubMed

Baser, M E

1992-08-01

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

75 FR 48853 - National Health Center Week, 2010

Federal Register 2010, 2011, 2012, 2013, 2014

2010-08-11

... Part IV The President Proclamation 8545--National Health Center Week, 2010 #0; #0; #0..., 2010 National Health Center Week, 2010 By the President of the United States of America A Proclamation America's community health centers are a vital component of our health care system, providing underserved...

77 FR 47765 - National Health Center Week, 2012

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-09

... Health Center Week, 2012 By the President of the United States of America A Proclamation For nearly half a century, health centers have helped make primary care services available and affordable for... lives. During National Health Center Week, we recognize the professionals who power our Nation's health...

School Based Health Centers

ERIC Educational Resources Information Center

Children's Aid Society, 2012

2012-01-01

School Based Health Centers (SBHC) are considered by experts as one of the most effective and efficient ways to provide preventive health care to children. Few programs are as successful in delivering health care to children at no cost to the patient, and where they are: in school. For many underserved children, The Children's Aid Society's…

[History of the cancer registry in Mexico].

PubMed

Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

2011-01-01

A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.

Implementation of Health Insurance Support Tools in Community Health Centers.

PubMed

Huguet, Nathalie; Hatch, Brigit; Sumic, Aleksandra; Tillotson, Carrie; Hicks, Elizabeth; Nelson, Joan; DeVoe, Jennifer E

2018-01-01

Health information technology (HIT) provides new opportunities for primary care clinics to support patients with health insurance enrollment and maintenance. We present strategies, early findings, and clinic reflections on the development and implementation of HIT tools designed to streamline and improve health insurance tracking at community health centers. We are conducting a hybrid implementation-effectiveness trial to assess novel health insurance enrollment and support tools in primary care clinics. Twenty-three clinics in 7 health centers from the OCHIN practice-based research network are participating in the implementation component of the trial. Participating health centers were randomized to 1 of 2 levels of implementation support, including arm 1 (n = 4 health centers, 11 clinic sites) that received HIT tools and educational materials and arm 2 (n = 3 health centers, 12 clinic sites) that received HIT tools, educational materials, and individualized implementation support with a practice coach. We used mixed-methods (qualitative and quantitative) to assess tool use rates and facilitators and barriers to implementation in the first 6 months. Clinics reported favorable attitudes toward the HIT tools, which replace less efficient and more cumbersome processes, and reflect on the importance of clinic engagement in tool development and refinement. Five of 7 health centers are now regularly using the tools and are actively working to increase tool use. Six months after formal implementation, arm 2 clinics demonstrated higher rates of tool use, compared with arm 1. These results highlight the value of early clinic input in tool development, the potential benefit of practice coaching during HIT tool development and implementation, and a novel method for coupling a hybrid implementation-effectiveness design with principles of improvement science in primary care research. © Copyright 2018 by the American Board of Family Medicine.

Making Child Care Centers SAFER: A Non-Regulatory Approach to Improving Child Care Center Siting

PubMed Central

Somers, Tarah S; Harvey, Margaret L.; Rusnak, Sharee Major

2011-01-01

Licensed child care centers are generally considered to be safe because they are required to meet state licensing regulations. As part of their licensing requirements, many states inspect child care centers and include an assessment of the health and safety of the facility to look for hazardous conditions or practices that may harm children. However, most states do not require an environmental assessment of the child care center building or land to prevent a center from being placed on, next to, or inside contaminated buildings. Having worked on several sites where child care centers were affected by environmental contaminants, the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry (ATSDR) endeavor to raise awareness of this issue. One of ATSDR's partner states, Connecticut, took a proactive, non-regulatory approach to the issue with the development its Child Day Care Screening Assessment for Environmental Risk Program. PMID:21563710

Implementing health management information systems: measuring success in Korea's health centers.

PubMed

Chae, Y M; Kim, S I; Lee, B H; Choi, S H; Kim, I S

1994-01-01

This article analyses the effects that the introduction and adoption of a health management information system (HMIS) can have on both the productivity of health center staff as well as on user-satisfaction. The focus is upon the service provided by the Kwonsun Health Center located in Suwon City, Korea. Two surveys were conducted to measure the changes in productivity and adoption (knowledge, persuasion, decision, implementation and confirmation) of health center staff over time. In addition, a third survey was conducted to measure the effects of HMIS on the level of satisfaction perceived by the visitors, by comparing the satisfaction level between the study health center and a similar health center identified as a control. The results suggest that HMIS increased the productivity and satisfaction of the staff but did not increase their persuasion and decision levels; and, that is also succeeded in increasing the levels of visitors' satisfaction with the services provided.

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

PubMed

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

2016-06-01

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

[Pain registries and similar data collections : A systematic review].

PubMed

Freytag, A; Scriba, B; Kaiser, U; Meißner, W

2016-12-01

Registries and similar data collections are a valuable addition to prospective studies as they provide data from real life treatment. In pain medicine only few such data collections exist so far. Aim of the study was to identify German-language registries or similar data collections that record patient-reported and pain-associated outcomes together with other data. A systematic search was carried out, which included the following sources: the data bases PubMed/MEDLINE and Embase, the German Registry for Clinical Trials (DRKS), ClinicalTrials.gov and registry portals known to us. Furthermore, an extended internet search was carried out via Google Scholar. References from personal scientific contacts and from operators of registries were also included. Questionnaires regarding registry items were sent to registry operators. Out of 381 search hits, 37 potentially relevant projects received a questionnaire and 35 answered. From the 35 responders 23 registries or similar data collections fulfilling inclusion criteria could be identified: 5 primarily pain-associated, 3 therapy-associated, 2 population-associated and 13 disease-associated (rheumatism/arthritis 5, joints/spine 4, hernias 1 and cancer 3). The reader obtains contact information on relevant data collections associated with pain, the contents, objectives and the pain assessment instruments applied. This review could give an important impulse for increased networking in health services research on pain. A limitation of the study was that identification of registries was made difficult due to an inconsistent definition and application of the term "registry", incomplete or insufficiently updated registry portals, missing scientific publications as well as two non-responders.

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

PubMed

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

2009-12-01

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

Chronic physical health consequences of being injured during the terrorist attacks on World Trade Center on September 11, 2001.

PubMed

Brackbill, Robert M; Cone, James E; Farfel, Mark R; Stellman, Steven D

2014-05-01

Few studies have focused on injuries from the World Trade Center disaster on September 11, 2001. Severe injury has health consequences, including an increased mortality risk 10 years after injury and the risk of mental health problems, such as posttraumatic stress disorder (PTSD). The World Trade Center Health Registry identified 14,087 persons with none of a selected group of preexisting chronic conditions before 2002 who were present during and soon after the World Trade Center attacks, 1,980 of whom reported sustaining 1 or more types of injury (e.g., a broken bone or burn). Survey data obtained during 2003-2004 and 2006-2007 were used to assess the odds of reporting a diagnosis of chronic conditions (heart disease, respiratory disease, diabetes, cancer) up to 5-6 years after the attacks. Number of injury types and probable PTSD were significantly associated with having any chronic conditions diagnosed in 2002-2007. Persons with multiple injuries and PTSD had a 3-fold higher risk of heart disease than did those with no injury and no PTSD, and persons with multiple injuries and with no PTSD had a 2-fold higher risk of respiratory diseases. The present study shows that injured persons with or without comorbid PTSD have a higher risk of developing chronic diseases. Clinicians should be aware of the heightened risk of chronic heart and respiratory conditions among injured persons.

Marketing and Community Mental Health Centers.

ERIC Educational Resources Information Center

Ferniany, Isaac W.; Garove, William E.

1983-01-01

Suggests that a marketing approach can be applied to community mental health centers. Marketing is a management orientation of providing services for, not to, patients in a systematic manner, which can help mental health centers improve services, strengthen community image, achieve financial independence and aid in staff recruitment. (Author)

78 FR 42788 - School-Based Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2013-07-17

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration School-Based Health Center Program AGENCY: Health Resources and Services Administration (HRSA), Department of Health... Gadsden County. SUMMARY: HRSA will be transferring a School-Based Health Center Capital (SBHCC) Program...

42 CFR 124.515 - Compliance alternative for community health centers, migrant health centers and certain National...

Code of Federal Regulations, 2014 CFR

2014-10-01

..., migrant health centers and certain National Health Service Corps sites. 124.515 Section 124.515 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH RESOURCES DEVELOPMENT... certain National Health Service Corps sites. (a) Period of effectiveness. For each fiscal year for which a...

42 CFR 124.515 - Compliance alternative for community health centers, migrant health centers and certain National...

Code of Federal Regulations, 2011 CFR

2011-10-01

..., migrant health centers and certain National Health Service Corps sites. 124.515 Section 124.515 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH RESOURCES DEVELOPMENT... certain National Health Service Corps sites. (a) Period of effectiveness. For each fiscal year for which a...

42 CFR 124.515 - Compliance alternative for community health centers, migrant health centers and certain National...

Code of Federal Regulations, 2012 CFR

2012-10-01

..., migrant health centers and certain National Health Service Corps sites. 124.515 Section 124.515 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH RESOURCES DEVELOPMENT... certain National Health Service Corps sites. (a) Period of effectiveness. For each fiscal year for which a...

42 CFR 124.515 - Compliance alternative for community health centers, migrant health centers and certain National...

Code of Federal Regulations, 2013 CFR

2013-10-01

..., migrant health centers and certain National Health Service Corps sites. 124.515 Section 124.515 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES HEALTH RESOURCES DEVELOPMENT... certain National Health Service Corps sites. (a) Period of effectiveness. For each fiscal year for which a...

A modular approach to disease registry design: successful adoption of an internet-based rare disease registry.

PubMed

Bellgard, Matthew I; Macgregor, Andrew; Janon, Fred; Harvey, Adam; O'Leary, Peter; Hunter, Adam; Dawkins, Hugh

2012-10-01

There is a need to develop Internet-based rare disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a secure and private way. However, this functionality is currently not available in many existing systems. A new approach to the design of an Internet-based architecture for disease registries has been developed for patients with clinical and genetic data in geographical disparate locations. The system addresses issues of multiple-level access by key stakeholders, security and privacy. The system has been successfully adopted for specific rare diseases in Australia and is open source. The results of this work demonstrate that it is feasible to design an open source Internet-based disease registry system in a scalable and customizable fashion and designed to facilitate interoperability with other systems. © 2012 Wiley Periodicals, Inc.

Clinical Quality Performance in U.S. Health Centers

PubMed Central

Shi, Leiyu; Lebrun, Lydie A; Zhu, Jinsheng; Hayashi, Arthur S; Sharma, Ravi; Daly, Charles A; Sripipatana, Alek; Ngo-Metzger, Quyen

2012-01-01

Objective To describe current clinical quality among the nation's community health centers and to examine health center characteristics associated with performance excellence. Data Sources National data from the 2009 Uniform Data System. Data Collection/Extraction Methods Health centers reviewed patient records and reported aggregate data to the Uniform Data System. Study Design Six measures were examined: first-trimester prenatal care, childhood immunization completion, Pap tests, low birth weight, controlled hypertension, and controlled diabetes. The top 25 percent performing centers were compared with lower performing (bottom 75 percent) centers on these measures. Logistic regressions were utilized to assess the impact of patient, provider, and institutional characteristics on health center performance. Principal Findings Clinical care and outcomes among health centers were generally comparable to national averages. For instance, 67 percent of pregnant patients received timely prenatal care (national = 68 percent), 69 percent of children achieved immunization completion (national = 67 percent), and 63 percent of hypertensive patients had blood pressure under control (national = 48 percent). Depending on the measure, centers with more uninsured patients were less likely to do well, while centers with more physicians and enabling service providers were more likely to do well. Conclusions Health centers provide quality care at rates comparable to national averages. Performance may be improved by increasing insurance coverage among patients and increasing the ratios of physicians and enabling service providers to patients. PMID:22594465

Utilizing a diabetic registry to manage diabetes in a low-income Asian American population.

PubMed

Seto, Winnie; Turner, Barbara S; Champagne, Mary T; Liu, Lynn

2012-08-01

Racial and income disparities persist in diabetes management in America. One third of African and Hispanic Americans with diabetes receive the recommended diabetes services (hemoglobin A1c [A1c] testing, retinal and foot examinations) shown to reduce diabetes complications and mortality, compared to half of whites with diabetes. National data for Asian Americans are limited, but studies suggest that those with language and cultural barriers have difficulty accessing health services. A diabetic registry has been shown to improve process and clinical outcomes in a population with diabetes. This study examined whether a community center that serves primarily low-income Asian American immigrants in Santa Clara County, California, could improve diabetes care and outcomes by implementing a diabetic registry. The registry was built using the Access 2007 software program. A total of 580 patients with diabetes were identified by reviewing charts, the appointment database, and reimbursement records from Medicaid, Medicare, and private insurance companies. Utilizing the registry, medical assistants contacted patients for follow-up appointments, and medical providers checked and tracked the patients' A1c results. Among the 431 patients who returned for treatment, the mean A1c was reduced from 7.27% to 6.97% over 8 months (P<0.001). Although 10.8% of the patients changed from controlled to uncontrolled diabetes post intervention, 32.6% of patients with uncontrolled diabetes converted to controlled diabetes (P<0.001). The diabetes control rate improved from 47% to 59% at the end of the study. This study demonstrated that a diabetic registry is an effective tool to manage an underserved population with diabetes, thereby reducing disparities in diabetes management.

Does Certification as Bariatric Surgery Center and Volume Influence the Outcome in RYGB-Data Analysis of German Bariatric Surgery Registry.

PubMed

Stroh, Christine; Köckerling, F; Lange, V; Wolff, S; Knoll, C; Bruns, C; Manger, Th

2017-02-01

To examine the association between the certification as bariatric surgery center and volume and patient outcome, data collected in the German Bariatric Surgery Registry were evaluated. All data were registered prospectively in cooperation with the Institute of Quality Assurance in Surgery at Otto-von-Guericke University Magdeburg. Data collection began in 2005 for all bariatric procedures in an online database. Participation in the quality assurance study is required for all certified bariatric surgery centers in Germany. Descriptive evaluation and matched pairs analysis were performed. Patients were matched via propensity score taking into account BMI, age, and incidence of comorbidities. During the period from 2005 to 2013, 3083 male and 10,639 female patients were operated on with the RYGB primary approach. In Centers of Competence (77.2 %) and non-accredited hospitals (76.3 %), the proportion of female patients was significantly lower than in Centers of Reference/Excellence (78.7 %; p = 0.002). The mean age in Centers of Reference/Excellence (41.2 years) was significantly lower than in Centers of Competence (43.2 years; p < 0.05). Propensity score analysis was performed to compare matched patients with regard to BMI, age, and incidence of comorbidities. The rate of general and surgical postoperative complications and mortality rate was significantly lower in certified Centers of Reference/Excellence compared to Centers of Competence with 29 and non-certified hospitals. There is evidence of improved patient outcome in certified bariatric surgery centers with higher volume. The study supports the concept of certification. There are different factors which can and cannot be preoperatively modified and influence the perioperative outcome.

75 FR 2549 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-01-15

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS ACTION: Notice of Noncompetitive Replacement Award to Regional Health Care Affiliates. SUMMARY: The Health Resources and Services...

Community health centers tackle rising demands and expectations.

PubMed

Hurley, Robert; Felland, Laurie; Lauer, Johanna

2007-12-01

As key providers of preventive and primary care for underserved people, including the uninsured, community health centers (CHCs) are the backbone of the U.S. health care safety net. Despite significant federal funding increases, community health centers are struggling to meet rising demand for care, particularly for specialty medical, dental and mental health services, according to findings from the Center for Studying Health System Change's (HSC) 2007 site visits to 12 nationally representative metropolitan communities. Health centers are responding to these pressures by expanding capacity and adding services but confront staffing, resource and other constraints. At the same time, CHCs are facing other demands, including increased quality reporting expectations, addressing racial and ethnic disparities, developing electronic medical records, and preparing for public health emergencies.

78 FR 24756 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2013-04-26

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Award to Genesee Health System. SUMMARY: The Health Resources and Services Administration (HRSA...

76 FR 1441 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2011-01-10

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Awards to Sunset Park Health Council, Inc. SUMMARY: The Health Resources and Services...

76 FR 17139 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-28

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Awards to Sunset Park Health Council, Inc. SUMMARY: The Health Resources and Services...

Toward a statewide health information technology center (abbreviated version).

PubMed

Sittig, Dean F; Joe, John C

2010-11-01

With the passage of The American Reinvestment and Recovery Act of 2009 that includes the Health Care Information Technology for Economic & Clinical Health Act, the opportunity for states to develop a Health Information Technology Center (THITC) has emerged. The Center provides the intellectual, financial, and technical leadership along with the governance and oversight for all health information technology-related activities in the state. This Center would be a free-standing, not-for-profit, public-private partnership that would be responsible for operating one or more (in large states) Regional Health Information Technology Extension Centers (Extension Centers) along with several Regional Health Information Exchanges (HIEs) and one or more Regional Health Information Data Centers (Data Centers). We believe that if these features and functions could be developed, deployed, and integrated statewide, the health and welfare of the citizens of the state could be improved while simultaneously reducing the costs associated with the provision of care.

Health Wellness and Hospital Learning Center.

ERIC Educational Resources Information Center

Bromberg, Bonnie; And Others

This paper describes activities conducted by an early childhood classroom in its health play center. A major purpose of this play center was to reduce children's fears and anxieties about medical personnel and emergency vehicles, and to raise awareness of the many aspects of health and wellness. The classroom environment contained a variety of…

Designing exposure registries for improved tracking of occupational exposure and disease.

PubMed

Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

2016-06-27

Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

75 FR 53701 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-01

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Non-competitive Replacement Awards to Sunset Park Health Council, Inc. SUMMARY: The Health Resources and Services...

75 FR 32797 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-06-09

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Awards to Albany Area Primary Health Care, Inc. SUMMARY: The Health Resources and Services...

76 FR 49645 - National Health Center Week, 2011

Federal Register 2010, 2011, 2012, 2013, 2014

2011-08-10

... system. Every day, men, women, and children find help at community health centers. These centers lead the... stronger, healthier Nation that drives the work of community health centers and fuels our efforts to...

JBEI Registry

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

Ham, Timothy

2008-12-01

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

Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

PubMed

Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

2016-02-01

The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement.

Patient-reported outcome measures in arthroplasty registries

PubMed Central

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

2016-01-01

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

A patient centered electronic health: eHealth system development.

PubMed

Schiza, Eirini C; Neokleous, Kleanthis C; Petkov, Nikolai; Schizas, Christos N

2015-01-01

Medical practice and patient-doctor relationship will continue improving while technology is integrated in our everyday life. In recent years the term eHealth landmarked a new era with improved health provider's skills and knowledge, and increased patient participation in medical care activities. To show why the design and implementation of a healthcare system needs to follow a specific philosophy dictated by the level of eHealth maturity of a country and its citizens. Based on the maturity level, an adaptable framework for implementing an Electronic Health System at national level is derived, guided by the Patient Centered Philosophy as defined and introduced by the EU directives. Implementation prerequisites are analyzed together with guiding principles for identifying the maturity level of an organization or country. Cyprus being a small EU country, it can be used as pilot site for the whole Europe, was chosen for this study and its maturity level analysis is presented. Recommendations that determine general steps needed to prepare the ground for an adequate patient-centered national healthcare system are accompanied. The implementation of an integrated Electronic Health Record at National level, as a prerequisite for a patient-centered eHealth environment is evidently demonstrated.

75 FR 21001 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-04-22

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Awards to Cornerstone Care, Inc. SUMMARY: The Health Resources and Services Administration (HRSA...

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

PubMed

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

2000-01-01

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

[Quality management in oncology supported by clinical cancer registries].

PubMed

Klinkhammer-Schalke, Monika; Gerken, Michael; Barlag, Hagen; Tillack, Anett

2015-01-01

Efforts in nationwide quality management for oncology have so far failed to comprehensively document all levels of care. New organizational structures such as population-based clinical cancer registries or certified organ cancer centers were supposed to solve this problem more sufficiently, but they have to be accompanied by valid trans-sectoral documentation and evaluation of clinical data. To measure feasibility and qualitative effectiveness of guideline implementation we approached this problem with a nationwide investigation from 2000 to 2011. The rate of neoadjuvant radio/chemotherapy in stage UICC II/III rectum cancer, cut-off point 80% for separating good from insufficient quality, was used as a quality indicator. The nationwide analysis indicates an increase from 45% to 70%, but only with the implementation strategy of CME. The combination of new structures, evidence-based quality indicators, organ cancer center and clinical cancer registries has shown good feasibility and seems promising. Copyright © 2015. Published by Elsevier GmbH.

75 FR 73110 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-11-29

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Noncompetitive Replacement Awards to Upper Room AIDS Ministry, Inc. SUMMARY: The Health Resources and Services Administration...

78 FR 25457 - Health Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2013-05-01

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Health Center Program AGENCY: Health Resources and Services Administration, HHS. ACTION: Notice of Administrative...: The Health Resources and Services Administration (HRSA) will be issuing a non-competitive award of...

School-based health centers: accessibility and accountability.

PubMed

Brindis, Claire D; Klein, Jonathan; Schlitt, John; Santelli, John; Juszczak, Linda; Nystrom, Robert J

2003-06-01

To examine the current experience of school-based health centers (SBHCs) in meeting the needs of children and adolescents, changes over time in services provided and program sponsorship, and program adaptations to the changing medical marketplace. Information for the 1998-1999 Census of School-Based Health Centers was collected through a questionnaire mailed to health centers in December 1998. A total of 806 SBHCs operating in schools or on school property responded, representing a 70% response rate. Descriptive statistics and cross-tab analyses were conducted. The number of SBHCs grew from 120 in 1988 to nearly 1200 in 1998, serving an estimated 1.1 million students. No longer primarily in urban high schools, health centers now operate in diverse areas in 45 states, serving students from kindergarten through high school. Sponsorship has shifted from community-based clinics to hospitals, local health departments, and community health centers, which represent 73% of all sponsors. Most use computer-based patient-tracking systems (88%), and 73% bill Medicaid and other third-party insurers for student-patient encounters. SBHCs have demonstrated leadership by implementing medical standards of care and providing accountable sources of health care. Although the SBHC model is responsive to local community needs, centers provide care for only 2% of children enrolled in U.S. schools. A lack of stable financing streams continues to challenge sustainability. As communities seek to meet the needs of this population, they are learning important lessons about providing acceptable, accessible, and comprehensive services and about implementing quality assurance mechanisms.

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2017-01-01

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

Developing and testing a cost data collection instrument for noncommunicable disease registry planning.

PubMed

Subramanian, Sujha; Tangka, Florence; Edwards, Patrick; Hoover, Sonja; Cole-Beebe, Maggie

2016-12-01

This article reports on the methods and framework we have developed to guide economic evaluation of noncommunicable disease registries. We developed a cost data collection instrument, the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool), based on established economics methods We performed in-depth case studies, site visit interviews, and pilot testing in 11 registries from multiple countries including India, Kenya, Uganda, Colombia, and Barbados to assess the overall quality of the data collected from cancer and cardiovascular registries. Overall, the registries were able to use the IntRegCosting Tool to assign operating expenditures to specific activities. We verified that registries were able to provide accurate estimation of labor costs, which is the largest expenditure incurred by registries. We also identified several factors that can influence the cost of registry operations, including size of the geographic area served, data collection approach, local cost of living, presence of rural areas, volume of cases, extent of consolidation of records to cases, and continuity of funding. Internal and external registry factors reveal that a single estimate for the cost of registry operations is not feasible; costs will vary on the basis of factors that may be beyond the control of the registries. Some factors, such as data collection approach, can be modified to improve the efficiency of registry operations. These findings will inform both future economic data collection using a web-based tool and cost and cost-effectiveness analyses of registry operations in low- and middle-income countries (LMICs) and other locations with similar characteristics. Copyright © 2016 Elsevier Ltd. All rights reserved.

Accelerated Adoption of Advanced Health Information Technology in Beacon Community Health Centers.

PubMed

Jones, Emily; Wittie, Michael

2015-01-01

To complement national and state-level HITECH Act programs, 17 Beacon communities were funded to fuel community-wide use of health information technology to improve quality. Health centers in Beacon communities received supplemental funding. This article explores the association between participation in the Beacon program and the adoption of electronic health records. Using the 2010-2012 Uniform Data System, trends in health information technology adoption among health centers located within and outside of Beacon communities were explored using differences in mean t tests and multivariate logistic regression. Electronic health record adoption was widespread and rapidly growing in all health centers, especially quality improvement functionalities: structured data capture, order and results management, and clinical decision support. Adoption lagged for functionalities supporting patient engagement, performance measurement, care coordination, and public health. The use of advanced functionalities such as care coordination grew faster in Beacon health centers, and Beacon health centers had 1.7 times higher odds of adopting health records with basic safety and quality functionalities in 2010-2012. Three factors likely underlie these findings: technical assistance, community-wide activation supporting health information exchange, and the layering of financial incentives. Additional technical assistance and community-wide activation is needed to support the use of functionalities that are currently lagging. © Copyright 2015 by the American Board of Family Medicine.

Health promotion health center project.

PubMed

Lee, Tae Wha; Lee, Chung Yul; Kim, Hee Soon; Ham, Ok Kyung

2007-01-01

As part of a major government support for health promotion, a health promotion health center (HPHC) project was launched at the national level in Korea. The purpose of the study was to describe this 2-year HPHC project within the framework of the Ottawa Charter for Health Promotion and to evaluate the preliminary outcomes of the community residents. A cross-sectional design was used. A total of 2,261 community residents participated in the survey, with 792 in HPHC sites and 1,469 in non-HPHC sites. The instrument included questions on participants' demographic characteristics, awareness, participation, health behavior (smoking, exercise, meat consumption, and blood pressure checkup), and satisfaction with the health promotion programs. The 5 main health promotion strategies of the Ottawa Charter were evident in the HPHCs. HPHCs were successful in enhancing awareness, participation, and satisfaction through their health promotion programs, although health behaviors were not significantly different between the 2 groups, except exercise. Ottawa Charter strategies embedded within the practice of the community health promotion activities were effective in increasing the short-term outcomes (awareness, participation, and satisfaction with health promotion programs), which is a promising finding for the development of health promotion behaviors in the future.

A protocol for bladder cancer screening and medical surveillance among high-risk groups: The Drake Health Registry experience

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

Marsh, G.M.; Callahan, C.; Pavlock, D.

In 1986, the Drake Health Registry Study initiated bladder cancer screening for 366 persons at high risk because of occupational exposure to beta-naphthylamine. The Drake Health Registry Study screening protocol consists of urinalysis, Papanicolaou cytology, and quantitative fluorescence image analysis. A positive screening test qualifies participants for a full diagnostic evaluation. The screening protocol has been modified during the first 3 years of the program's existence to address unexpected patterns of test results and to incorporate advances in screening technology. The current protocol, which has a two-tiered screening schedule, has been utilized successfully for 15 months. Of the 26 positivemore » results to date most have been based on abnormal Papanicolaou cytology and/or quantitative fluorescence image analysis. Bladder abnormalities were cited among most of the 18 study members who underwent diagnostic evaluation, including chronic cystitis, inflammation, hyperplasia, and dysplasia. We conclude that the screening program is detecting very early changes in a relatively young cohort and that these persons must be monitored over a number of years to ensure adequate medical surveillance.« less

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

PubMed

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

2016-12-01

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

77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

Federal Register 2010, 2011, 2012, 2013, 2014

2012-04-13

...] Notice of Establishment of a Veterinary Services Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION: Notice. SUMMARY: This notice announces the availability of a new Veterinary... a Veterinary Services (VS) Stakeholder Registry, an email subscription service for individuals and...

Toxic substances registry system: Index of material safety data sheets

NASA Technical Reports Server (NTRS)

1991-01-01

The Material Safety Data Sheets (MSDSs) listed in this index reflect product inventories and associated MSDSs which have been submitted to the Toxic Substance Registry database maintained by the Base Operations Contractor at the Kennedy Space Center. The purpose of this index is to provide a means to access information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at the Kennedy Space Center.

The USGS National Wildlife Health Center: Advancing wildlife and ecosystem health

USGS Publications Warehouse

Moede Rogall, Gail; Sleeman, Jonathan M.

2017-01-11

In 1975, the Federal government responded to the need for establishing national expertise in wildlife health by creating the National Wildlife Health Center (NWHC), a facility within the Department of the Interior; the NWHC is the only national center dedicated to wildlife disease detection, control, and prevention. Its mission is to provide national leadership to safeguard wildlife and ecosystem health through active partnerships and exceptional science. Comparisons are often made between the NWHC, which strives to protect the health of our Nation’s wildlife, and the Centers for Disease Control and Prevention (CDC), which strive to protect public health. The NWHC, a science center of the U.S. Geological Survey (USGS) with specialized laboratories, works to safeguard the Nation’s wildlife from diseases by studying the causes and drivers of these threats, and by developing strategies to prevent and manage them. In addition to the main campus, located in Madison, Wisconsin, the NWHC also operates the Honolulu Field Station that addresses wildlife health issues in Hawaii and the Pacific Region.

Predicting the evolution of low back pain patients in routine clinical practice: results from a registry within the Spanish National Health Service.

PubMed

Kovacs, Francisco M; Seco, Jesús; Royuela, Ana; Corcoll Reixach, Josep; Abraira, Víctor

2012-11-01

The Spanish National Health Service (SNHS) is a tax-funded public organization that provides free health care to every resident in Spain. To develop models for predicting the evolution of low back pain (LBP) in routine clinical practice within SNHS. Analysis of a prospective registry in routine clinical practice, in 17 centers across SNHS. Patient sample includes 4,477 acute and chronic LBP patients treated in primary and hospital care. Pain and disability, measured through validated instruments. Patients treated for LBP were assessed at baseline and 3 months later. Data gathered were the following: sex, age, employment status, duration of pain, severity of LBP, pain down to the leg (LP) and disability, history of lumbar surgery, diagnostic procedures undertaken, imaging findings, and treatments used throughout the study period. Three separate multivariate logistic regression models were developed for predicting a clinically relevant improvement in LBP, LP, and disability at 3 months. In total, 4,261 patients (95.2%) attended follow-up. For all the models, calibration was reasonable and the area under the receiver operating characteristic curve was ≥0.640. For LBP, LP, and disability, factors associated with a higher probability of improvement at 3 months were the following: not having undergone lumbar surgery, higher baseline scores for the corresponding variable, lower ones for the rest, and being treated with neuroreflexotherapy. Additional factors were the following: for LBP, shorter pain duration; for LP, not undergoing electromyography; and for disability, shorter pain duration, not being diagnosed with disc degeneration, and being treated with muscle relaxants and not opioids. A prospective registry can be used for developing predictive models to quantify the odds that a given LBP patient will experience a clinically relevant improvement. This may empower patients for an informed shared decision making. Copyright © 2012 Elsevier Inc. All rights reserved.

Chronic Physical Health Consequences of Being Injured During the Terrorist Attacks on World Trade Center on September 11, 2001

PubMed Central

Brackbill, Robert M.; Cone, James E.; Farfel, Mark R.; Stellman, Steven D.

2014-01-01

Few studies have focused on injuries from the World Trade Center disaster on September 11, 2001. Severe injury has health consequences, including an increased mortality risk 10 years after injury and the risk of mental health problems, such as posttraumatic stress disorder (PTSD). The World Trade Center Health Registry identified 14,087 persons with none of a selected group of preexisting chronic conditions before 2002 who were present during and soon after the World Trade Center attacks, 1,980 of whom reported sustaining 1 or more types of injury (e.g., a broken bone or burn). Survey data obtained during 2003−2004 and 2006−2007 were used to assess the odds of reporting a diagnosis of chronic conditions (heart disease, respiratory disease, diabetes, cancer) up to 5–6 years after the attacks. Number of injury types and probable PTSD were significantly associated with having any chronic conditions diagnosed in 2002–2007. Persons with multiple injuries and PTSD had a 3-fold higher risk of heart disease than did those with no injury and no PTSD, and persons with multiple injuries and with no PTSD had a 2-fold higher risk of respiratory diseases. The present study shows that injured persons with or without comorbid PTSD have a higher risk of developing chronic diseases. Clinicians should be aware of the heightened risk of chronic heart and respiratory conditions among injured persons. PMID:24561992

Registry of Youth Onset Diabetes in India (YDR): Rationale, Recruitment, and Current Status.

PubMed

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

2016-09-01

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. 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. 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%). This registry provides a unique opportunity to study the natural history of youth-onset diabetes in India. © 2016 Diabetes Technology Society.

42 CFR 493.1850 - Laboratory registry.

Code of Federal Regulations, 2010 CFR

2010-10-01

... 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 or...

42 CFR 493.1850 - Laboratory registry.

Code of Federal Regulations, 2011 CFR

2011-10-01

... 42 Public Health 5 2011-10-01 2011-10-01 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 or...

Center for the Advancement of Health

MedlinePlus

... Cancer Care Kellogg Health Scholars Program KP Burch Leadership Program Diversity Data Place, Migration & Health Network * The Center for Advancing Health was a nonprofit organization founded in 1992, supported by individuals and foundations ...

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

PubMed Central

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

2015-01-01

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

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

PubMed

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

2010-10-01

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

Toward Teen Health. The Ounce of Prevention Fund School-Based Adolescent Health Centers.

ERIC Educational Resources Information Center

Stone, Rebecca

Sponsored by the Ounce of Prevention Fund, this report presents a comprehensive look at three Toward Teen Health high school-based, adolescent health centers in Chicago, Illinois. Following a brief introduction, the report provides the rationale for opening adolescent health centers and outlines the principles that guide the centers. Next, a…

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

PubMed

Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

2016-04-18

We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

Intergenerational effects of endocrine-disrupting compounds: a review of the Michigan polybrominated biphenyl registry.

PubMed

Curtis, Sarah W; Conneely, Karen N; Marder, Mary E; Terrell, Metrecia L; Marcus, Michele; Smith, Alicia K

2018-06-11

Endocrine-disrupting compounds (EDCs) are a broad class of chemicals present in many residential products that can disrupt hormone signaling and cause health problems in humans. Multigenerational cohorts, like the Michigan polybrominated biphenyl registry, are ideal for studying the effects of intergenerational exposure. Registry participants report hormone-related health problems, particularly in those exposed before puberty or those in the second generation exposed through placental transfer or breastfeeding. However, more research is needed to determine how EDCs cause health problems and the mechanisms underlying intergenerational exposure. Utilizing existing data in this registry, along with genetic and epigenetic approaches, could provide insight to how EDCs cause human disease and help to determine the risk to exposed populations and future generations.

World apheresis registry report.

PubMed

Stegmayr, Bernd; Ptak, Jan; Wikström, Björn

2007-02-01

The establishment of national apheresis registries has been helpful to learn about therapeutic profiles and adverse event incidences. During 2003, the World Apheresis Registry was established and centers from all countries were invited to participate to register their apheresis activities (at www.iml.umu.se/medicin). In this paper, we will report and analyze the first data retrieved from three centers, in 2 European countries, that registered a total of 388 therapeutic apheresis treatments in 122 patients, 95% due to acute indications. Statistical analyses were performed using an independent Student t-test and Fisher's test. A p-value of less than 0.05 was considered significant. Fifty percent of the treated patients were women. The mean age of the patients was 51 years (+/-17, range 16-84) and there was no difference between genders (w 50.4, m 51.6 years). Diagnoses for treatment were mainly neurological and vasculitis. In 63% peripheral access was used with a central double lumen catheter, 22% in the jugular vein, 8% in the subclavian vein and 6% the femoral vein. Significant inter-center differences were seen in regard to the access used. The main technique used was centrifugation for conventional plasma exchange (86%), while other modes were leukapheresis, erythrapheresis, platelet apheresis, LDL-apheresis and adsorption of antibodies. Citrate was the only anticoagulant in 92%. During plasma exchange procedures using centrifugation, replacement was by albumin only (58%) or plasma, the latter often in combination with albumin (42%). Adverse events (AEs) were noted in 11% of the procedures. Patients with hypocalcaemia side effects with tingling sensations were included in those data as mild AE and as moderate AEs if they received calcium (Ca) medication. No patient died due to adverse effects. A mild AE was present in 1.8% and moderate in 8.5%. During two procedures (0.5%), the AE was considered severe and therefore the procedure was interrupted. If those with

Pediatric-Collaborative Health Outcomes Information Registry (Peds-CHOIR): A Learning Health System to Guide Pediatric Pain Research and Treatment

PubMed Central

Bhandari, Rashmi P.; Feinstein, Amanda B.; Huestis, Samantha E.; Krane, Elliot J.; Dunn, Ashley L.; Cohen, Lindsey L.; Kao, Ming C.; Darnall, Beth D.; Mackey, Sean C.

2016-01-01

The pediatric adaptation of the Collaborative Health Outcomes Information Registry (Peds-CHOIR) is a free, open source, flexible learning health care system (LHS) that meets the call by the Institute of Medicine (IOM) for the development of national registries to guide research and precision pain medicine. This report is a technical account of the first application of Peds-CHOIR with three aims: to 1) describe the design and implementation process of the LHS; 2) highlight how the clinical system concurrently cultivates a research platform rich in breadth (e.g., clinic characteristics) and depth (e.g., unique patient and caregiver reporting patterns); and 3) demonstrate the utility of capturing patient-caregiver dyad data in real time, with dynamic outcomes tracking that informs clinical decisions and delivery of treatments. Technical, financial, and systems-based considerations of Peds-CHOIR are discussed. Cross-sectional, retrospective data from patients with chronic pain (N = 352; 8 – 17 years; M = 13.9 years) and their caregivers are reported, including NIH Patient Reported Outcomes Measurement Information System (PROMIS) domains (mobility, pain interference, fatigue, peer relations, anxiety and depression) and the Pain Catastrophizing Scale. Consistent with the literature, analyses of initial visits revealed impairments across physical, psychological and social domains. Patients and caregivers evidenced agreement in observable variables (mobility); however, caregivers consistently endorsed greater impairment regarding internal experiences (pain interference, fatigue, peer relations, anxiety, depression) than patients’ self-report. A platform like Peds-CHOIR highlights predictors of chronic pain outcomes on a group level and facilitates individually tailored treatment(s). Challenges of implementation and future directions are discussed. PMID:27280328

Respiratory-Related Hospitalizations following Prophylaxis in the Canadian Registry for Palivizumab (2005–2012) Compared to Other International Registries

PubMed Central

Mitchell, Ian; Lanctôt, Krista L.

2013-01-01

Respiratory syncytial virus (RSV) infection occurs commonly in infants aged ≤2 years, and severe infection results in hospitalization with accompanying morbidity and mortality. Palivizumab has been available for prophylaxis for the past 15 years. Prospective data on patients who received palivizumab from 2005 to 2012 has been assembled in the Canadian registry (CARESS) to document utilization, compliance, and health outcomes in both hospital and community settings. Long-term data is necessary to evaluate the impact of palivizumab on the incidence of RSV infections, minimize healthcare resources, and identify which infant subpopulations are receiving prophylaxis. A database search was also conducted for similar information from published registries, and hospitalization rates were compared to results from randomized clinical trials (RCTs).Overall hospitalization rates (percent; range) for respiratory-related illnesses and RSV-specific infection in infants who meet standard indications for prophylaxis were 6.6 (3.3–7.7) and 1.55 (0.3–2.06), respectively, in CARESS, which closely aligns with registry data from 4 other countries, despite the former comprising the largest cohort of complex patients internationally. Overall RSV-related hospitalization rates were lower across registries compared to equivalent patients in RCTs. Registry data provides valuable information regarding real-world experience with palivizumab, while facilitating the genesis of new research themes. PMID:23861694

Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry.

PubMed

Tilson, Hugh; Primatesta, Paola; Kim, Dennis; Rauer, Barbara; Hawkins, Philip N; Hoffman, Hal M; Kuemmerle-Deschner, Jasmin; van der Poll, Tom; Walker, Ulrich A

2013-09-10

The Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases and encompass Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal Onset Multisystem Inflammatory Disease (NOMID). Canakinumab is a monoclonal antibody directed against IL-1 beta and approved for CAPS patients but requires post-approval monitoring due to low and short exposures during the licensing process. Creative approaches to observational methodology are needed, harnessing novel registry strategies to ensure Health Care Provider reporting and patient monitoring. A web-based registry was set up to collect information on long-term safety and effectiveness of canakinumab for CAPS. Starting in November 2009, this registry enrolled 241 patients in 43 centers and 13 countries by December 31, 2012. One-third of the enrolled population was aged < 18; the overall population is evenly divided by gender. Enrolment is ongoing for children. Innovative therapies in orphan diseases require post-approval structures to enable in depth understanding of safety and natural history of disease. The rarity and distribution of such diseases and unpredictability of treatment require innovative methods for enrolment and follow-up. Broad international practice-based recruitment and web-based data collection are practical.

Using a State Birth Registry as a Quality Improvement Tool.

PubMed

Lannon, Carole; Kaplan, Heather C; Friar, Kelly; Fuller, Sandra; Ford, Susan; White, Beth; Besl, John; Paulson, John; Marcotte, Michael; Krew, Michael; Bailit, Jennifer; Iams, Jay

2017-08-01

Background  Birth registry data are universally collected, generating large administrative datasets. However, these data are typically not used for quality improvement (QI) initiatives in perinatal medicine because the quality and timeliness of the information is uncertain. Objective  We sought to identify and address causes of inaccuracy in recording birth registry information so that birth registry data could support statewide obstetrical quality initiatives in Ohio. Study Design  The Ohio Perinatal Quality Collaborative and the Ohio Department of Health Vital Statistics used QI techniques in 15 medium-sized maternity hospitals to identify and remove systemic sources of inaccuracy in birth registry data. The primary outcome was the rate of scheduled deliveries without medical indication between 37 0/7 and 38 6/7 weeks at participating hospitals from birth registry data. Results  Inaccurate birth registry data most commonly resulted from limited communication between clinical and medical record staff. The rate of scheduled births between 37 0/7 and 38 6/7 weeks' gestation without a documented medical indication as recorded in the birth registry declined by 35%. Conclusion  A QI initiative aimed at increasing the accuracy of birth registry information demonstrated the utility of these data for surveillance of perinatal outcomes and has led to ongoing efforts to support birth registrars in submitting accurate data. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Provision of Telemedicine Services by Community Health Centers

PubMed Central

Sharac, Jessica; Jacobs, Feygele

2014-01-01

The objective of this study was to assess the use of telemedicine services at community health centers. A national survey was distributed to all federally qualified health centers to gather data on their use of health information technology, including telemedicine services. Over a third of responding health centers (37%) provided some type of telemedicine service while 63% provided no telemedicine services. A further analysis that employed ANOVA and chi-square tests to assess differences by the provision of telemedicine services (provided no telemedicine services, provided one telemedicine service, and provided two or more telemedicine services) found that the groups differed by Meaningful Use compliance, location, percentage of elderly patients, mid-level provider, medical, and mental health staffing ratios, the percentage of patients with diabetes with good blood sugar control, and state and local funds per patient and per uninsured patient. This article presents the first national estimate of the use of telemedicine services at community health centers. Further study is needed to determine how to address factors, such as reimbursement and provider shortages, that may serve as obstacles to further expansion of telemedicine services use by community health centers. PMID:25422721

Mental Health Screening Center

MedlinePlus

... use of any specific treatment for mood disorders. Education Mood Disorders Depression Bipolar Disorder Anxiety Screening Center ... DBSA Veteran Peer Specialist Training Peer Specialist Continuing Education Training and Consultation Services Mental Health First Aid ...

"Centering the Margins": Moving Equity to the Center of Men's Health Research.

PubMed

Griffith, Derek M

2018-05-01

How might the science of men's health progress if research on marginalized or subordinated men is moved from the margins of the literature to the center? This commentary seeks to answer this question, suggesting that if more attention is paid to men of color and other marginalized men, the field will be greatly enriched in its ability to understand determinants of men's health. Reimagining men's health by moving men's health disparities to a primary focus of the field may yield critical new insights that would be essential to moving men's health to the center of health equity research. Focusing on the dual goals of improving the health of marginalized men and examining the determinants of disparities among men and between men and women will yield insights into mechanisms, pathways, and strategies to improve men's health and address health disparities. Current definitions of health disparities limit the nation's ability to dedicate resources to populations that need attention-men of color and other marginalized men-that do not fit these definitions. Moving marginalized men to the center of research in men's health will foster new ways of understanding determinants of men's health that cannot be identified without focusing on populations of men whose health is as influenced by race, ethnicity, and other structures of marginalization as it is by gender and masculinities. Using Black men as a case example, the article illustrates how studying marginalized men can refine the study of men's health and health equity.

Cancer registries in Japan: National Clinical Database and site-specific cancer registries.

PubMed

Anazawa, Takayuki; Miyata, Hiroaki; Gotoh, Mitsukazu

2015-02-01

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.

Forging successful academic-community partnerships with community health centers: the California statewide Area Health Education Center (AHEC) experience.

PubMed

Fowkes, Virginia; Blossom, H John; Mitchell, Brenda; Herrera-Mata, Lydia

2014-01-01

Increased access to insurance under the Affordable Care Act will increase demands for clinical services in community health centers (CHCs). CHCs also have an increasingly important educational role to train clinicians who will remain to practice in community clinics. CHCs and Area Health Education Centers (AHECs) are logical partners to prepare the health workforce for the future. Both are sponsored by the Health Resources and Services Administration, and they share a mission to improve quality of care in medically underserved communities. AHECs emphasize the educational side of the mission, and CHCs the service side. Building stronger partnerships between them can facilitate a balance between education and service needs.From 2004 to 2011, the California Statewide AHEC program and its 12 community AHECs (centers) reorganized to align training with CHC workforce priorities. Eight centers merged into CHC consortia; others established close partnerships with CHCs in their respective regions. The authors discuss issues considered and approaches taken to make these changes. Collaborative innovative processes with program leadership, staff, and center directors revised the program mission, developed common training objectives with an evaluation plan, and defined organizational, functional, and impact characteristics for successful AHECs in California. During this planning, centers gained confidence as educational arms for the safety net and began collaborations with statewide programs as well as among themselves. The AHEC reorganization and the processes used to develop, strengthen, and identify standards for centers forged the development of new partnerships and established academic-community trust in planning and implementing programs with CHCs.

Health care utilisation among older persons with intellectual disability and dementia: a registry study.

PubMed

Axmon, A; Karlsson, B; Ahlström, G

2016-12-01

Both persons with intellectual disability (ID) and persons with dementia have high disease burdens, and consequently also high health care needs. As life expectancy increases for persons with ID, the group of persons with the dual diagnosis of ID and dementia will become larger. Through national registries, we identified 7936 persons who had received support directed to persons with ID during 2012, and an age- and gender-matched sample from the general population. A national registry was also used to collect information on health care utilisation (excluding primary care) for the period 2002-2012. Health care utilisation was measured as presence and number of planned and unplanned in-patient and out-patient visits, as well as length of stay. In comparison with persons with ID but without dementia, persons with ID and dementia were more likely to have at least one planned out-patient visit (odds ratio [OR] 8.07), unplanned out-patient visit (OR 2.41), planned in-patient visit (OR 2.76) or unplanned in-patient visit (OR 4.19). However, among those with at least one of each respective outcome, the average number of visits did not differ between those with and without dementia. Persons with ID and dementia were less likely to have at least one planned out-patient visit than persons with dementia in the general population sample (OR 0.40), but more likely to have at least one unplanned in-patient visit (OR 1.90). No statistically significant differences were found for having at least one unplanned out-patient or planned in-patient visit. Nevertheless, among those with at least one unplanned out-patient visit, the number of visits was higher in the general population sample. Persons with ID and dementia are less likely to receive planned health care than persons with dementia in the general population. They have, however, higher levels of unplanned health care utilisation. This may be an indication that the current support system is not sufficient to meet the challenges

The Brazilian Twin Registry.

PubMed

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

2016-12-01

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

Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

PubMed

Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

2015-12-29

The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement. Copyright © 2015 American College of Cardiology Foundation and The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

Health assessments and other activities of the Agency for Toxic Substances and Disease Registry (ATSDR)

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

Not Available

The purpose of this memorandum is provide Department of Energy (DOE) Field Organizations having line management responsibilities for the conduct of environmental restoration activities with information of ATSDR responsibilities and activities at Departmental facilities subject to response actions under the Comprehensive Environmental Response Compensation and Liability Act (CERCLA), as amended by the Superfund Amendments and Reauthorization Act (SARA), or corrective actions under the Resource Conservation and Recovery Act (RCRA). ATSDR's duties include: (1) establishing registries of disease and exposure at sites having releases of hazardous substances; (2) when necessary, providing medical care and testing of exposed persons; (3) developing toxicologicalmore » profiles on hazardous substances: (4) maintaining lists of areas closed to public; (5) researching the relationship between exposure to toxic substances and illness: (6) conducting health assessments; (7) responding to petition to conduct a health assessment (anyone may petition ATSDR to perform a health assessment); (8) developing educational materials regarding toxic substances for use by health professionals.« less

The National Institutes of Health Clinical Center

MedlinePlus

... Issue Past Issues The National Institutes of Health Clinical Center Past Issues / Spring 2007 Table of Contents ... Communications, NIH Clinical Center Welcome to the nation's clinical research hospital. The NIH Clinical Center: For more ...

Do school-based health centers improve adolescents' access to health care, health status, and risk-taking behavior?

PubMed

Kisker, E E; Brown, R S

1996-05-01

The purpose of this investigation was to assess the School-Based Adolescent Health Care Program, which provided comprehensive health-related services in 24 school-based health centers. The outcomes evaluation compared a cohort of students attending 19 participating schools and a national sample of urban youths, using logit models to control for observed differences between the two groups of youths. Outcome measures included self-reports concerning health center utilization, use of other health care providers, knowledge of key health facts, substance use, sexual activity, contraceptive use, pregnancies and births, and health status. The health centers increased students' access to health care and improved their health knowledge. However, the estimated impacts on health status and risky behaviors were inconsistent, and most were small and not statistically significant. School-based health centers can increase students' health knowledge and access to health-related services, but more intensive or different services are needed if they are to significantly reduce risk-taking behaviors.

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

PubMed

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

2013-03-01

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

Local Anesthetic Systemic Toxicity: A Review of Recent Case Reports and Registries.

PubMed

Gitman, Marina; Barrington, Michael J

2018-02-01

This review summarizes presenting features, management, and outcomes of local anesthetic systemic toxicity (LAST) from published cases and those submitted to online registries capturing use of intravenous lipid emulsion (ILE) therapy. The results of single-center and multicenter registries and epidemiologic studies complement this information. Between March 2014 and November 2016, 47 separate cases of LAST were described in 35 peer-reviewed articles. Local anesthetic systemic toxicity events occurred as a result of penile blocks (23%), local infiltration (17%), and upper/lower extremity, torso, and neuraxial blockade. Twenty-two patients (47%) were treated with ILE, and 2 patients (4.3%) died. During the same time period, 11 cases submitted to lipidrescue.org were treated with ILE and survived. The incidence of LAST reported in registries is 0.03% or 0.27 (95% confidence interval, 0.21-0.35) per 1000 peripheral nerve blocks (denominator of 251,325). Seizure (53% and 61% from case reports and registries, respectively) was the most common presenting feature.

[Obligatory vaccination reporting in Saxony-Anhalt. Possibilities and limitations of establishing a computerized vaccination registry].

PubMed

Oppermann, H; Wahl, G; Borrmann, M; Fleischer, J

2009-11-01

Vaccination registries are databases intended to assess and manage complete vaccination data of as many individuals as possible in a population under survey. The task of these registries is to identify low vaccination rates on the individual and population level, to enable systems of reminding individuals, to focus vaccination campaigns and to maximize overall vaccination coverage. Saxony-Anhalt is the only federal state of Germany to have a law that prescribes the reporting of vaccinations. Vaccinations of children up to the age of 7 are reported to the regional public health services. However, as the law provides no regulations as to how the data should be registered and processed, the development of a vaccination registry depends entirely on the initiative and cooperation of the "players in vaccination". The key players in vaccination in Saxony-Anhalt have recently created a Vaccination-Committee, which set out to develop the theoretical standards and a software prototype for the establishment of a computerized vaccination registry. Recent developments in the public health reporting system of Saxony-Anhalt (which strives to modernize its computerized assessment of child and adolescent health) are now opening the possibility to integrate the vaccination registry into the commercially available child health software.

Improving Interoperability between Registries and EHRs

PubMed Central

Blumenthal, Seth

2018-01-01

National performance measurement needs clinical data that track the performance of multi disciplinary teams across episodes of care. Clinical registries are ideal platforms for this work due to their capture of structured, specific data across specialties. Because registries collect data at a national level, and registry data are captured in a consistent structure and format within each registry, registry data are useful for measurement and analysis “out of the box”. Registry business models are hampered by the cost of collecting data from EHRs and other source systems and abstracting or mapping them to fit registry data models. The National Quality Registry Network (NQRN) has launched Registries on FHIR, an initiative to lower barriers to achieving semantic interoperability between registries and source data systems. In 2017 Registries on FHIR conducted an information gathering campaign to learn where registries want better interoperability, and how to go about improving it. PMID:29888033

Differences in Investigator-Initiated Trials between Japan and Other Countries: Analyses of Clinical Trials Sponsored by Academia and Government in the ClinicalTrials.gov Registry and in the Three Japanese Registries.

PubMed

Ito, Tatsuya

2016-01-01

Following the amendment of the Pharmaceutical Affairs Law in Japan in 2003 researchers were permitted to begin investigator-initiated trials (IITs). In subsequent years, however, the number of IITs remained low. In other countries in Asia as well as in Europe, North America, and South Africa, the number of IITs has increased over the past decade. The differences in the characteristics of IITs between Japan and other countries are unknown. Some studies have analyzed the characteristics of all clinical trials according to registry databases, but there has been less research focusing on IITs. The purpose of this study is to analyze the characteristics of IITs in the ClinicalTrials.gov registry and in the three Japanese registries, to identify differences in IITs between Japan and other countries. Using Thomson Reuters Pharma™, trials sponsored by academia and government as IITs in 2010 and registered in ClinicalTrials.gov were identified. IITs from 2004 to 2012 in Japan were identified in the three Japanese registries: the University Hospital Medical Information Network Clinical Trials Registry, the Japan Pharmaceutical Information Center Clinical Trials Information, and the Japan Medical Association Center for Clinical Trials, Clinical Trials Registry. Characterization was made of the trial purposes, phases, participants, masking, arms, design, controls, and other data. New and revised IITs registered in ClinicalTrials.gov during 2010 averaged about 40% of all sponsor-identified trials. IITs were nearly all early-phase studies with small numbers of participants. A total of 56 Japanese IITs were found over a period of 8 years, and these were also almost nearly all early-phase studies with small numbers of participants. There appear to be no great differences between Japan and other countries in terms of characteristics of IITs. These results should prompt a new review of the IIT environment in Japan.

National Kidney Registry: 213 transplants in three years.

PubMed

Veale, Jeffrey; Hil, Garet

2010-01-01

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

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

PubMed

Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

2018-04-01

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

National Center for Farmworker Health

MedlinePlus

... Access Data Health Centers Population Estimates Resources Performance Management & Governance Tool Box > Administrative Governance Human Resources Needs Assessment Service Delivery Emergency Preparedness Call for ...

Public Health Nursing: Public Health Centers

Science.gov Websites

Locations Anchorage-based Itinerants Bethel Craig Delta Junction Dillingham Fairbanks Homer Juneau Kenai agencies with state grant assistance Frontier Region Delta Junction Dillingham Fairbanks Kodiak Nome Tok [back to top] Delta Junction Public Health Center 2857 Alaska Hwy, Room 210 Delta Junction, Alaska 99737

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

PubMed

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

2012-01-01

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

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

PubMed Central

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

2015-01-01

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

Utilization of professional mental health services according to recognition rate of mental health centers.

PubMed

Lee, Hyo Jung; Ju, Young Jun; Park, Eun-Cheol

2017-04-01

Despite the positive effect of community-based mental health centers, the utilization of professional mental health services appears to be low. Therefore, we analyzed the relationship between regional recognition of mental health centers and utilization of professional mental health services. We used data from the Community Health Survey (2014) and e-provincial indicators. Only those living in Seoul, who responded that they were either feeling a lot of stress or depression, were included in the study. Multiple logistic regression analysis using generalized estimating equations was performed to examine both individual- and regional-level variables associated with utilization of professional mental health services. Among the 7338 participants who reported depression or stress, 646 (8.8%) had consulted a mental health professional for their symptoms. A higher recognition rate of mental health centers was associated with more utilization of professional mental health services (odds ratio [OR]=1.05, 95% confidence interval [CI]=1.03-1.07). Accessibility to professional mental health services could be improved depending on the general population's recognition and attitudes toward mental health centers. Therefore, health policy-makers need to plan appropriate strategies for changing the perception of mental health services and informing the public about both the benefits and functions of mental health centers. Copyright © 2017. Published by Elsevier B.V.

Improving Access to Health Care: School-Based Health Centers.

ERIC Educational Resources Information Center

Dowden, Shauna L.; Calvert, Richard D.; Davis, Lisa; Gullotta, Thomas P.

This article explores an approach for better serving the complete health care needs of children, specifically, the efficacy of school-based health centers (SBHCs) to provide a service delivery mechanism capable of functioning as a medical home for children, providing primary care for both their physical and behavioral health care needs. The…

South Florida Health Care Centers | NSU

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Osteopathic Medicine Dr. Pallavi Patel College of Health Care Sciences Farquhar Honors College H. Wayne Committed to community service through a variety of programs. Health Care Centers Over 20 health care Accreditations Visit Campus Virtual Tour Newsroom Board of Trustees Contact Us Apply Now / Request Info Health

Can evidence-based health policy from high-income countries be applied to lower-income countries: considering barriers and facilitators to an organ donor registry in Mumbai, India.

PubMed

Vania, Diana K; Randall, Glen E

2016-01-13

Organ transplantation has become an effective means to extend lives; however, a major obstacle is the lack of availability of cadaveric organs. India has one of the lowest cadaver organ donation rates in the world. If India could increase the donor rate, the demand for many organs could be met. Evidence from high-income countries suggests that an organ donor registry can be a valuable tool for increasing donor rates. The purpose of this study is to determine whether the implementation of an organ donor registry is a feasible and appropriate policy option to enhance cadaver organ donation rates in a lower-income country. This qualitative policy analysis employs semi-structured interviews with physicians, transplant coordinators, and representatives of organ donation advocacy groups in Mumbai. Interviews were designed to better understand current organ donation procedures and explore key informants' perceptions about Indian government health priorities and the likelihood of an organ donor registry in Mumbai. The 3-i framework (ideas, interests, and institutions) is used to examine how government decisions surrounding organ donation policies are shaped. Findings indicate that organ donation in India is a complex issue due to low public awareness, misperceptions of religious doctrines, the need for family consent, and a nation-wide focus on disease control. Key informants cite social, political, and infrastructural barriers to the implementation of an organ donor registry, including widely held myths about organ donation, competing health priorities, and limited hospital infrastructure. At present, both the central government and Maharashtra state government struggle to balance international pressures to improve overall population health with the desire to also enhance individual health. Implementing an organ donor registry in Mumbai is not a feasible or appropriate policy option in India's current political and social environment, as the barriers, identified through

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

PubMed

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

2014-01-01

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

Primary immunodeficiency diseases: a 30-year patient registry from the referral center for primary immunodeficiencies in Greece.

PubMed

Michos, Athanasios; Raptaki, Maria; Tantou, Sofia; Tzanoudaki, Marianna; Spanou, Kleopatra; Liatsis, Manolis; Constantinidou, Nikki; Paschali, Evangelia; Varela, Ioanna; Moraloglou, Olga; Bakoula, Chryssa; Kanariou, Maria

2014-10-01

Primary Immunodeficiencies (PID) represent a group of heterogeneous immune diseases with important biological significance. We reviewed the records of children diagnosed with PID in the Referral Center for PID in our country in order to describe the epidemiological, clinical and laboratory characteristics of immunodeficient patients. During a 30-year period, 147 patients (101 males, 68.7 %), with a mean age of 6.5 years at the time of diagnosis, were diagnosed with PID. The most prevalent diagnoses of PID were: "Combined Immunodeficiency" in 46 (31.3 %) patients, "Well-defined immunodeficiency syndrome" in 35 (23.1 %) patients, "Predominantly antibody deficiency" in 30 (20.4 %) patients and "Congenital defect of phagocyte function or both" in 28 (19 %) patients. There was a higher prevalence of males with "Combined immunodeficiency" (p < 0.033) and "Predominantly antibody deficiency" (p < 0.02) compared to females. The median age of children at the onset of symptoms and at the time of diagnosis was 0.5y (IQR: 0.1-2.5) and 2y (IQR: 0.6-7.2), respectively. The median diagnostic delay was 0.9y (IQR: 0.2-4.8). This period was shorter for patients with "Combined immunodeficiency" [median 0.3y (IQR: 0.1-1)], and longer for those with "Predominantly antibody deficiency" [median 3.2y (IQR: 0.2-5.9) or "Disease of immune dysregulation" [median 3.2y (IQR: 0.1-6.6)]. Comparing the rates in our population with those of the European Registry (ESID), the rates of "Combined immunodeficiencies", "Well-defined syndromes" and "Congenital birth defects and/or function of phagocytes" were significantly higher in this study (p <0,001). PID registry analysis improves knowledge in the field of Immunology and enhances awareness, early detection, diagnosis, and management of this rare but significant group of diseases.

RItA: The Italian severe/uncontrolled asthma registry.

PubMed

Maio, S; Baldacci, S; Bresciani, M; Simoni, M; Latorre, M; Murgia, N; Spinozzi, F; Braschi, M; Antonicelli, L; Brunetto, B; Iacovacci, P; Roazzi, P; Pini, C; Pata, M; La Grasta, L; Paggiaro, P; Viegi, G

2018-03-01

The Italian severe/uncontrolled asthma (SUA) web-based registry encompasses demographic, clinical, functional, and inflammatory data; it aims to raise SUA awareness, identifying specific phenotypes and promoting optimal care. Four hundred and ninety three adult patients from 27 Italian centers (recruited in 2011-2014) were analyzed. Mean age was 53.8 years. SUA patients were more frequently female (60.6%), with allergic asthma (83.1%). About 30% showed late onset of asthma diagnosis/symptoms (>40 years); the mean age for asthma symptoms onset was 30.2 years and for asthma diagnosis 34.4 years. 97.1% used ICS (dose 2000 BDP), 93.6% LABA in association with ICS, 53.3% LTRAs, 64.1% anti-IgE, 10.7% theophylline, and 16.0% oral corticosteroids. Mean FEV 1 % pred of 75.1%, median values of 300/mm 3 of blood eosinophil count, 323 kU/L of serum total IgE, and 24 ppb of FENO were shown. Most common comorbidities were allergic rhinitis (62.4%), gastroesophageal reflux (42.1%), sinusitis (37.9%), nasal polyposis (30.2%), and allergic conjunctivitis (30.2%). 55.7% of SUA patients had exacerbations in the last 12 months, 9.7% emergency department visits, and 7.3% hospitalizations. Factors associated with exacerbation risk were obesity (OR, 95% CI 2.46, 1.11-5.41), psychic disorders (2.87, 0.89-9.30-borderline), nasal polyps (1.86, 0.88-3.89-borderline), partial/poor asthma treatment adherence (2.54, 0.97-6.67-borderline), and anti-IgE use in a protective way (0.26, 0.12-0.53). Comparisons to severe asthma multicenter studies and available registries showed data consistency across European and American populations. An international effort in the implementation of SUA patients' registries could help to better understand the clinical features and to manage severe asthma, representing a non-negligible socioeconomic burden for health services. © 2017 EAACI and John Wiley and Sons A/S. Published by John Wiley and Sons Ltd.

Web resources for rare auto-inflammatory diseases: towards a common patient registry.

PubMed

Touitou, Isabelle; Hentgen, Véronique; Koné-Paut, Isabelle

2009-06-01

To review information resources on rare auto-inflammatory disorders (AIDs) for use by health care professionals, focusing particularly on patient registries. Using relevant key words, we surveyed the websites of several scientific societies of immunology, paediatrics and rheumatology, as well as Pubmed and specialized databases for AIDs. The Internet provides a wide variety of information related to AIDs. Moreover, several other initiatives have been undertaken to create new resources for professionals. We reviewed six patient registries for rare AIDs, taking a special interest in the submission questionnaire. We revealed a wide overlap between the items used in the questionnaires, whereas the currently available registries appeared inappropriate for AIDs patients with complex or undefined diagnosis. AIDs share common clinical features, pathophysiological pathways and therapeutic approaches. Although several resources are now available for rare AIDs, a unique and dedicated site gathering all aspects of these diseases as a whole is still lacking, i.e. covering research as well as the needs of AIDs patients and health care professionals. Our study thus advocates a merging of existing patient registries or the creation of a common database.

RENAC: National Registry of Congenital Anomalies of Argentina.

PubMed

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

2013-12-01

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

Association between patient-centered medical home rating and operating cost at federally funded health centers.

PubMed

Nocon, Robert S; Sharma, Ravi; Birnberg, Jonathan M; Ngo-Metzger, Quyen; Lee, Sang Mee; Chin, Marshall H

2012-07-04

Little is known about the cost associated with a health center's rating as a patient-centered medical home (PCMH). To determine whether PCMH rating is associated with operating cost among health centers funded by the US Health Resources and Services Administration. Cross-sectional study of PCMH rating and operating cost in 2009. PCMH rating was assessed through surveys of health center administrators conducted by Harris Interactive of all 1009 Health Resources and Services Administration–funded community health centers. The survey provided scores from 0 (worst) to 100 (best) for total PCMH score and 6 subscales: access/communication, care management, external coordination, patient tracking, test/referral tracking, and quality improvement. Costs were obtained from the Uniform Data System reports submitted to the Health Resources and Services Administration. We used generalized linear models to determine the relationship between PCMH rating and operating cost. Operating cost per physician full-time equivalent, operating cost per patient per month, and medical cost per visit. Six hundred sixty-nine health centers (66%) were included in the study sample, with 340 excluded because of nonresponse or incomplete data. Mean total PCMH score was 60 (SD, 12; range, 21-90). For the average health center, a 10-point higher total PCMH score was associated with a $2.26 (4.6%) higher operating cost per patient per month (95% CI, $0.86-$4.12). Among PCMH subscales, a 10-point higher score for patient tracking was associated with higher operating cost per physician full-time equivalent ($27,300; 95% CI, $3047-$57,804) and higher operating cost per patient per month ($1.06; 95% CI, $0.29-$1.98). A 10-point higher score for quality improvement was also associated with higher operating cost per physician full-time equivalent ($32,731; 95% CI, $1571-$73,670) and higher operating cost per patient per month ($1.86; 95% CI, $0.54-$3.61). A 10-point higher PCMH subscale score for access

Review of patient registries in dermatology.

PubMed

DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

2016-10-01

Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

Recruiting community health centers into pragmatic research: Findings from STOP CRC.

PubMed

Coronado, Gloria D; Retecki, Sally; Schneider, Jennifer; Taplin, Stephen H; Burdick, Tim; Green, Beverly B

2016-04-01

Challenges of recruiting participants into pragmatic trials, particularly at the level of the health system, remain largely unexplored. As part of Strategies and Opportunities to STOP Colon Cancer in Priority Populations (STOP CRC), we recruited eight separate community health centers (consisting of 26 individual safety net clinics) into a large comparative effectiveness pragmatic study to evaluate methods of raising the rates of colorectal cancer screening. In partnership with STOP CRC's advisory board, we defined criteria to identify eligible health centers and applied these criteria to a list of health centers in Washington, Oregon, and California affiliated with Oregon Community Health Information Network, a 16-state practice-based research network of federally sponsored health centers. Project staff contacted centers that met eligibility criteria and arranged in-person meetings of key study investigators with health center leadership teams. We used the Consolidated Framework for Implementation Research to thematically analyze the content of discussions during these meetings to identify major facilitators of and barriers to health center participation. From an initial list of 41 health centers, 11 met the initial inclusion criteria. Of these, leaders at three centers declined and at eight centers (26 clinic sites) agreed to participate (73%). Participating and nonparticipating health centers were similar with respect to clinic size, percent Hispanic patients, and percent uninsured patients. Participating health centers had higher proportions of Medicaid patients and higher baseline colorectal cancer screening rates. Common facilitators of participation were perception by center leadership that the project was an opportunity to increase colorectal cancer screening rates and to use electronic health record tools for population management. Barriers to participation were concerns of center leaders about ability to provide fecal testing to and assure follow-up of

Recruiting community health centers into pragmatic research: Findings from STOP CRC

PubMed Central

Coronado, Gloria D; Retecki, Sally; Schneider, Jennifer; Taplin, Stephen H; Burdick, Tim; Green, Beverly B

2015-01-01

Background Challenges of recruiting participants into pragmatic trials, particularly at the level of the health system, remain largely unexplored. As part of Strategies and Opportunities to STOP Colon Cancer in Priority Populations (STOP CRC), we recruited eight separate community health centers (consisting of 26 individual safety net clinics) into a large comparative effectiveness pragmatic study to evaluate methods of raising the rates of colorectal cancer screening. Methods In partnership with STOP CRC’s advisory board, we defined criteria to identify eligible health centers and applied these criteria to a list of health centers in Washington, Oregon, and California affiliated with OCHIN (formerly Oregon Community Health Information Network), a 16-state practice-based research network of federally sponsored health centers. Project staff contacted centers that met eligibility criteria and arranged in-person meetings of key study investigators with health center leadership teams. We used the Consolidated Framework for Implementation Research to thematically analyze the content of discussions during these meetings to identify major facilitators of and barriers to health center participation. Results From an initial list of 41 health centers, 11 met the initial inclusion criteria. Of these, leaders at three centers declined and at eight centers (26 clinic sites) agreed to participate (73%). Participating and nonparticipating health centers were similar with respect to clinic size, percent Hispanic patients, and percent uninsured patients. Participating health centers had higher proportions of Medicaid patients and higher baseline colorectal cancer screening rates. Common facilitators of participation were perception by center leadership that the project was an opportunity to increase colorectal cancer screening rates and to use electronic health record tools for population management. Barriers to participation were concerns of center leaders about ability to

Cancer registries in four provinces in Turkey: a case study

PubMed Central

2012-01-01

Background The burden of cancer affects all countries; while high-income countries have the capacity and resources to establish comprehensive cancer control programs, low and middle-income countries have limited resources to develop such programs. This paper examines factors associated with the development of cancer registries in four provinces in Turkey. It looks at the progress made by these registries, the challenges they faced, and the lessons learned. Other countries with similar resources can benefit from the lessons identified in this case study. Methods A mix of qualitative case study methods including key informant interviews, document review and questionnaires was used. Results This case study showed that surveillance systems that accurately report current cancer-related data are essential components of a country’s comprehensive cancer control program. At the initial stages, Turkey established one cancer registry with international support, which was used as a model for other registries. The Ministry of Health recognized the value of the registry data and its contribution to the country’s cancer control program and is supporting sustainability of these registries as a result. Conclusions This study demonstrates how Turkey was able to use resources from multiple sources to enhance its population based cancer registry system in four provinces. With renewed international interest in non-communicable diseases and cancer following the 2011 UN high-level meeting on NCDs, low- and middle- income countries can benefit from Turkey’s experience. Other countries can utilize lessons learned from Turkey as they address cancer burden and establish their own registries. PMID:23110989

Multicenter breast cancer collaborative registry.

PubMed

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC).

Multicenter Breast Cancer Collaborative Registry

PubMed Central

Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A.; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

2011-01-01

The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute’s Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

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

PubMed Central

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

2018-01-01

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

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

PubMed

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

2016-12-01

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

Pediatric Intestinal Rehabilitation and Transplantation Registry: Initial Report from a European Collaborative Registry.

PubMed

Totonelli, Giorgia; Tambucci, Roberto; Boscarelli, Alessandro; Hermans, Dominique; Dall'Oglio, Luigi; Diamanti, Antonella; d'Aische, Aloys du Bois; Pakarinen, Mikko; Reding, Raymond; Morini, Francesco; Bagolan, Pietro; Fusaro, Fabio

2018-02-01

 Short bowel syndrome (SBS) is the main cause of intestinal failure (IF) in the pediatric population. To promote the standardization of care of these patients, the registry of Pediatric Intestinal Rehabilitation and Transplantation (PIRAT) has been established. The aim of this study is to describe patients with IF using PIRAT database.  Data from two tertiary care European referral Centers registered in PIRAT (https://www.studeon.eu/pirat) were analyzed (1994-2015). Neonatal SBS-related IF was defined as need for parenteral nutrition (PN) to sustain life and growth for more than 75 days, after extensive bowel resection during neonatal period. Data included patient demographics, disease at birth, residual small intestine, and intestinal autonomy (PN on/off).  In this study, 114 children with SBS-related IF were identified (male 60%). Median gestational age was 35.3 weeks (interquartile range [IQR]: 33.0-38.0); median birth weight was 2,440 g (IQR: 1,700-2,990). The main causes of SBS were intestinal atresia in 31 (27%), midgut volvulus in 29 (25%), necrotizing enterocolitis in 23 (20%), and gastroschisis in 12 (11%). Nine (7.9%) patients died on PN (six sepsis, two IF-associated liver disease, and one multiorgan failure). Median residual small bowel length was 46 cm (IQR: 13.0-92.5). Ileocecal valve was resected in 48 patients (42%). Intestinal autonomy was achieved in 68% patients.  We present the web-based registry PIRAT and the first results of patients with IF registered from two European Centers. PIRAT could give the opportunity to create a dedicated international network (IF-net) to standardize, improve, and spread the therapeutic paths for the rare and heterogeneous condition of SBS-related IF. Georg Thieme Verlag KG Stuttgart · New York.

78 FR 44625 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-07-24

... DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne... to ``OMB Control No. 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire... health effects of service members' exposure to toxic airborne chemicals and fumes caused by open burn...

Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry

PubMed Central

2013-01-01

Background The Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases and encompass Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal Onset Multisystem Inflammatory Disease (NOMID). Canakinumab is a monoclonal antibody directed against IL-1 beta and approved for CAPS patients but requires post-approval monitoring due to low and short exposures during the licensing process. Creative approaches to observational methodology are needed, harnessing novel registry strategies to ensure Health Care Provider reporting and patient monitoring. Methods A web-based registry was set up to collect information on long-term safety and effectiveness of canakinumab for CAPS. Results Starting in November 2009, this registry enrolled 241 patients in 43 centers and 13 countries by December 31, 2012. One-third of the enrolled population was aged < 18; the overall population is evenly divided by gender. Enrolment is ongoing for children. Conclusions Innovative therapies in orphan diseases require post-approval structures to enable in depth understanding of safety and natural history of disease. The rarity and distribution of such diseases and unpredictability of treatment require innovative methods for enrolment and follow-up. Broad international practice-based recruitment and web-based data collection are practical. PMID:24016338

Camp health center usage at a Scout jamboree.

PubMed

Stephens, Christopher R

2012-11-01

To describe the incidence, reasons for, and characteristics of health center visits by campers at a Canadian provincial Scout jamboree. A retrospective observational design utilized a medical record review process. The study sample was 804 campers present for 4,816 camper days (CDs). There were 172 visits to the camp health center for an incidence rate of 36 per 1,000 CDs. The median length of stay was 30 minutes. Patients with illnesses were seen 1.7 times more frequently than those with injuries. One in five visits was for follow-up. More than 97% of visits occurred during the scheduled health center hours of operation. The rate of adverse events (AEs) was 3.32 per 1,000 CDs, accounting for 9.3% of all visits. The incidence of health center visits and AEs are consistent with studies conducted with other resident camps. Camp administrators, organizers, and healthcare personnel must be prepared to provide care for a wide range of illnesses and injuries at camp. Understanding the trends associated with camp health center usage allows adequate personnel and physical resources to be prepared and identifies increased usage levels. Nurses can use this information to advocate for nurses to be employed at camps to aid in health prevention services as well as to manage illnesses and injuries.

Balancing the Optimal and the Feasible: A Practical Guide for Setting Up Patient Registries for the Collection of Real-World Data for Health Care Decision Making Based on Dutch Experiences.

PubMed

de Groot, Saskia; van der Linden, Naomi; Franken, Margreet G; Blommestein, Hedwig M; Leeneman, Brenda; van Rooijen, Ellen; Koos van der Hoeven, J J M; Wouters, Michel W; Westgeest, Hans M; Uyl-de Groot, Carin A

2017-04-01

The aim of this article was to provide practical guidance in setting up patient registries to facilitate real-world data collection for health care decision making. This guidance was based on our experiences and involvement in setting up patient registries in oncology in the Netherlands. All aspects were structured according to 1) mission and goals ("the Why"), 2) stakeholders and funding ("the Who"), 3) type and content ("the What"), and 4) identification and recruitment of patients, data handling, and pharmacovigilance ("the How"). The mission of most patient registries is improving patient health by improving the quality of patient care; monitoring and evaluating patient care is often the primary goal ("the Why"). It is important to align the objectives of the registry and agree on a clear and functional governance structure with all stakeholders ("the Who"). There is often a trade off between reliability, validity, and specificity of data elements and feasibility of data collection ("the What"). Patient privacy should be carefully protected, and address (inter-)national and local regulations. Patient registries can reveal unique safety information, but it can be challenging to comply with pharmacovigilance guidelines ("the How"). It is crucial to set up an efficient patient registry that serves its aims by collecting the right data of the right patient in the right way. It can be expected that patient registries will become the new standard alongside randomized controlled trials due to their unique value. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Mental Health Services in School-Based Health Centers: Systematic Review

ERIC Educational Resources Information Center

Bains, Ranbir Mangat; Diallo, Ana F.

2016-01-01

Mental health issues affect 20-25% of children and adolescents, of which few receive services. School-based health centers (SBHCs) provide access to mental health services to children and adolescents within their schools. A systematic review of literature was undertaken to review evidence on the effectiveness of delivery of mental health services…

Health center financial performance: national trends and state variation, 1998-2004.

PubMed

Shi, Leiyu; Collins, Patricia B; Aaron, Kaytura Felix; Watters, Vanessa; Shah, Leslie Greenblat

2007-01-01

For four decades, health centers have provided quality, cost-effective primary healthcare to underserved populations. Using the Uniform Data System, this study analyzes national trends in health center patients, providers, and financial performance for 1998-2004, and state-specific data for 2004. Between 1998 and 2004, health centers served increasing numbers of underserved patients, which included patients who were uninsured or on Medicaid, minorities, and patients at or below poverty level. Even though the number of health center providers and patients increased, patient-to-provider ratios did not change significantly. Medicaid remained the single largest source of health center revenue, accounting for 36.4 percent of total revenue in 2004. Compared with Medicare, private insurance, and self-pay, Medicaid consistently reimbursed health centers at the highest rate per patient. Federal and nonfederal grants to support care for the uninsured as well as enabling services such as transportation, translation, and other support systems is one of many important sources of revenue. Financial challenges for health centers included increasing costs and varied or declining rates of reimbursement for services rendered. However, health centers became more self-sufficient over time, average net revenues increased, and operating margins were predominantly positive. Data on individual states, with different numbers and types of health centers, varied widely in all of these categories. In conclusion, health centers rely on federal and nonfederal grant support in concert with the Medicaid program as major funding sources and continued financial stability will be contingent upon health centers' ability to balance revenues with the cost of managing the vulnerable populations that they serve.

Effects of Patient-Centered Medical Home Attributes on Patients’ Perceptions of Quality in Federally Supported Health Centers

PubMed Central

Lebrun-Harris, Lydie A.; Shi, Leiyu; Zhu, Jinsheng; Burke, Matthew T.; Sripipatana, Alek; Ngo-Metzger, Quyen

2013-01-01

PURPOSE We sought to assess patients’ ratings of patient-centered medical home (PCMH) attributes and overall quality of care within federally supported health centers. METHODS Data were collected through the 2009 Health Center Patient Survey (n = 4,562), which consisted of in-person interviews and included a nationally representative sample of patients seen in health centers. Quality measures included patients’ perceptions of overall quality of services, perceptions of quality of clinician advice/treatment, and likelihood of referring friends and relatives to the health center. PCMH attributes included (1) access to care getting to health center, (2) access to care during visit, (3) patient-centered communication with health care clinicians, (4) patient-centered communication with support staff, (5) self-management support for chronic conditions, (6) self-management support for behavioral risks, and (7) comprehensive preventive care. Bivariate analysis and logistic regressions were used to examine associations between patients’ perceptions of PCMH attributes and patient-reported quality of care. RESULTS Eighty-four percent of patients reported excellent/very good overall quality of services, 81% reported excellent/very good quality of clinician care, and 84% were very likely to refer friends and relatives. Higher patient ratings on the access to care and patient-centered communication attributes were associated with higher odds of patient-reported high quality of care on the 3 outcome measures. CONCLUSIONS More than 80% of patients perceived high quality of care in health centers. PCMH attributes related to access to care and communication were associated with greater likelihood of patients reporting high-quality care. PMID:24218374

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

PubMed

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

2012-01-01

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

78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-05

... Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity: Comment Request AGENCY... ascertain and monitor the health effects of the exposure of members of the Armed Forces to toxic airborne... to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire...

Association Between Patient-Centered Medical Home Rating and Operating Cost at Federally Funded Health Centers

PubMed Central

Nocon, Robert S.; Sharma, Ravi; Birnberg, Jonathan M.; Ngo-Metzger, Quyen; Lee, Sang Mee; Chin, Marshall H.

2013-01-01

Context Little is known about the cost associated with a health center’s rating as a patient-centered medical home (PCMH). Objective To determine whether PCMH rating is associated with operating cost among health centers funded by the US Health Resources and Services Administration. Design, Setting, and Participants Cross-sectional study of PCMH rating and operating cost in 2009. PCMH rating was assessed through surveys of health center administrators conducted by Harris Interactive of all 1009 Health Resources and Services Administration–funded community health centers. The survey provided scores from 0 (worst) to 100 (best) for total PCMH score and 6 subscales: access/communication, care management, external coordination, patient tracking, test/referral tracking, and quality improvement. Costs were obtained from the Uniform Data System reports submitted to the Health Resources and Services Administration. We used generalized linear models to determine the relationship between PCMH rating and operating cost. Main Outcome Measures Operating cost per physician full-time equivalent, operating cost per patient per month, and medical cost per visit. Results Six hundred sixty-nine health centers (66%) were included in the study sample, with 340 excluded because of nonresponse or incomplete data. Mean total PCMH score was 60 (SD,12; range, 21–90). For the average health center, a 10-point higher total PCMH score was associated with a $2.26 (4.6%) higher operating cost per patient per month (95% CI, $0.86–$4.12). Among PCMH subscales, a 10-point higher score for patient tracking was associated with higher operating cost per physician full-time equivalent ($27 300; 95% CI,$3047–$57 804) and higher operating cost per patient per month ($1.06;95%CI,$0.29–$1.98). A 10-point higher score for quality improvement was also associated with higher operating cost per physician full-time equivalent ($32 731; 95% CI, $1571–$73 670) and higher operating cost per patient

Toxic Substances Registry System Index of Material Safety Data Sheets

NASA Technical Reports Server (NTRS)

1997-01-01

The July 1997 revision of the Index of Material Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

PubMed

Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

2017-10-27

Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

Adolescent Health Care in School-Based Health Centers. Position Statement

ERIC Educational Resources Information Center

National Assembly on School-Based Health Care, 2008

2008-01-01

School-based health centers (SBHCs) are considered one of the most effective strategies for delivering preventive care, including reproductive and mental health care services, to adolescents--a population long considered difficult to reach. National Assembly on School-Based Health Care (NASBHC) recommends practices and policies to assure…

International Students, University Health Centers, and Memorable Messages about Health

ERIC Educational Resources Information Center

Carmack, Heather J.; Bedi, Shireen; Heiss, Sarah N.

2016-01-01

International students entering US universities often experience a variety of important socialization messages. One important message is learning about and using the US health system. International students often first encounter the US health system through their experiences with university health centers. The authors explore the memorable…

Health care employee perceptions of patient-centered care.

PubMed

Balbale, Salva Najib; Turcios, Stephanie; LaVela, Sherri L

2015-03-01

Given the importance of health care employees in the delivery of patient-centered care, understanding their unique perspectives is essential for quality improvement. The purpose of this study was to use photovoice to evaluate perceptions and experiences around patient-centered care among U.S. Veterans Affairs (VA) health care employees. We asked participants to take photographs of salient features in their environment related to patient-centered care. We used the photographs to facilitate dialogue during follow-up interviews. Twelve VA health care employees across two VA sites participated in the project. Although most participants felt satisfied with their work environment and experiences at the VA, they identified several areas for improvement. These included a need for more employee health and wellness initiatives and a need for enhanced opportunities for training and professional growth. Application of photovoice enabled us to learn about employees' unique perspectives around patient-centered care while engaging them in an evaluation of care delivery. © The Author(s) 2014.

2. HEALTH CENTER OFFICE SOUTH BACK AND EAST SIDE, FROM ...

Library of Congress Historic Buildings Survey, Historic Engineering Record, Historic Landscapes Survey

2. HEALTH CENTER OFFICE SOUTH BACK AND EAST SIDE, FROM PASSAGE BEHIND COURTHOUSE, CAMERA FACING NORTHWEST. - Lancaster County Center, Health Center Office, 4845 Cedar Avenue, Lancaster, Los Angeles County, CA

42 CFR 405.2462 - Payment for rural health clinic and Federally qualified health center services.

Code of Federal Regulations, 2010 CFR

2010-10-01

... 42 Public Health 2 2010-10-01 2010-10-01 false Payment for rural health clinic and Federally... AND DISABLED Rural Health Clinic and Federally Qualified Health Center Services Payment for Rural Health Clinic and Federally Qualified Health Center Services § 405.2462 Payment for rural health clinic...

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

PubMed Central

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

2015-01-01

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

Health Extension in New Mexico: An Academic Health Center and the Social Determinants of Disease

PubMed Central

Kaufman, Arthur; Powell, Wayne; Alfero, Charles; Pacheco, Mario; Silverblatt, Helene; Anastasoff, Juliana; Ronquillo, Francisco; Lucero, Ken; Corriveau, Erin; Vanleit, Betsy; Alverson, Dale; Scott, Amy

2010-01-01

The Agricultural Cooperative Extension Service model offers academic health centers methodologies for community engagement that can address the social determinants of disease. The University of New Mexico Health Sciences Center developed Health Extension Rural Offices (HEROs) as a vehicle for its model of health extension. Health extension agents are located in rural communities across the state and are supported by regional coordinators and the Office of the Vice President for Community Health at the Health Sciences Center. The role of agents is to work with different sectors of the community in identifying high-priority health needs and linking those needs with university resources in education, clinical service and research. Community needs, interventions, and outcomes are monitored by county health report cards. The Health Sciences Center is a large and varied resource, the breadth and accessibility of which are mostly unknown to communities. Community health needs vary, and agents are able to tap into an array of existing health center resources to address those needs. Agents serve a broader purpose beyond immediate, strictly medical needs by addressing underlying social determinants of disease, such as school retention, food insecurity, and local economic development. Developing local capacity to address local needs has become an overriding concern. Community-based health extension agents can effectively bridge those needs with academic health center resources and extend those resources to address the underlying social determinants of disease. PMID:20065282

The utility of heart failure registries: a descriptive and comparative study of two heart failure registries.

PubMed

Trullàs, Joan Carles; Miró, Òscar; Formiga, Francesc; Martín-Sánchez, Francisco Javier; Montero-Pérez-Barquero, Manuel; Jacob, Javier; Quirós-López, Raúl; Herrero Puente, Pablo; Manzano, Luís; Llorens, Pere

2016-05-01

Registries are useful to address questions that are difficult to answer in clinical trials. The objective of this study was to describe and compare two heart failure (HF) cohorts from two Spanish HF registries. We compared the RICA and EAHFE registries, both of which are prospective multicentre cohort studies including patients with decompensated HF consecutively admitted to internal medicine wards (RICA) or attending the emergency department (EAHFE). From the latter registry we only included patients who were admitted to internal medicine wards. A total of 5137 patients admitted to internal medicine wards were analysed (RICA: 3287 patients; EAHFE: 1850 patients). Both registries included elderly patients (RICA: mean (SD) age 79 (9) years; EAHFE: mean (SD) age 81 (9) years), with a slight predominance of female gender (52% and 58%, respectively, in the RICA and EAHFE registries) and with a high proportion of patients with preserved ejection fraction (58% and 62%, respectively). Some differences in comorbidities were noted, with diabetes mellitus, dyslipidaemia, chronic renal failure and atrial fibrillation being more frequent in the RICA registry while cognitive and functional impairment predominated in the EAHFE registry. The 30-day mortality after discharge was 3.4% in the RICA registry and 4.8% in the EAHFE registry (p<0.05) and the 30-day readmission rate was 7.5% in the RICA registry (readmission to hospital) and 24.0% in the EAHFE registry (readmission to emergency department) (p<0.001). We found differences in the clinical characteristics of patients admitted to Spanish internal medicine wards for decompensated HF depending on inclusion in either the RICA or EAHFE registry. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Campus Health Centers' Lack of Information Regarding Providers: A Content Analysis of Division-I Campus Health Centers' Provider Websites.

PubMed

Perrault, Evan K

2018-07-01

Campus health centers are a convenient, and usually affordable, location for college students to obtain health care. Staffed by licensed and trained professionals, these providers can generally offer similar levels of care that providers at off-campus clinics can deliver. Yet, previous research finds students may forgo this convenient, on-campus option partially because of a lack of knowledge regarding the quality of providers at these campus clinics. This study sought to examine where this information deficit may come from by analyzing campus health centers' online provider information. All Division-I colleges or universities with an on-campus health center, which had information on their websites about their providers (n = 294), had their providers' online information analyzed (n = 2,127 providers). Results revealed that schools commonly offer professional information (e.g., provider specialties, education), but very little about their providers outside of the medical context (e.g., hobbies) that would allow a prospective student patient to more easily relate. While 181 different kinds of credentials were provided next to providers' names (e.g., MD, PA-C, FNP-BC), only nine schools offered information to help students understand what these different credentials meant. Most schools had information about their providers within one-click of the homepage. Recommendations for improving online information about campus health center providers are offered.

Biliary atresia: lessons learned from the voluntary German registry.

PubMed

Leonhardt, J; Kuebler, J F; Leute, P J; Turowski, C; Becker, T; Pfister, E-D; Ure, B; Petersen, C

2011-03-01

Aim of the study was to carry out a 5-year survey of German patients with biliary atresia (BA) and to launch a discussion regarding the feasibility of voluntary registries in unregulated healthcare systems. A retrospective analysis of German BA patients born between 2001 and 2005, based on data collected from the voluntary European Biliary Atresia Registry (EBAR), was carried out and supplemented by data from all BA patients who underwent liver transplantation at the only 4 pediatric transplantation centers (pLTx) in Germany which are so far not registered at EBAR. Survival rates were calculated using Kaplan-Meier analysis and compared by Cox regression to determine the predictive value of age at surgery and the influence of the center size (fewer or more than 5 patients/study period) on overall survival and survival with native liver. A critical review of the 148 German EBAR charts revealed that 11 patients (7.4%) had no biliary atresia. The remaining 137 patients from EBAR together with 46 BA patients who underwent LTx without prior registration at EBAR were evaluated with a median follow-up of 39 months (range: 25-85 months). 29 hospitals performed a total of 159 Kasai procedures, but only 7 centers treated 5 or more patients (116 patients, range: 5-68), and 22 hospitals performed less than 5 KP (43 patients, range: 1-4). Primary LTx was performed in 21 patients (11.5%) and 3 patients died without surgical intervention. 16 patients were lost to follow-up (8.7%). Overall survival after 2 years was 83.3% (139 patients), including 105 patients (63%) who had undergone LTx and 34 patients (20.3%) with native liver. 28 patients died (16.7%), 8 after LTx (5.8%). The experience of the center was the only factor with a significant predictive value for jaundice-free survival with native liver (p=0.001). 25% of all German BA patients were not registered at EBAR, and 29 clinics were involved in the surgical management of BA patients. Therefore a new approach consisting of

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

PubMed

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

2017-08-01

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

Psychology in academic health centers: a true healthcare home.

PubMed

Rozensky, Ronald H

2012-12-01

This article is based on the invited presentation by the author at the American Psychological Association's Annual Convention, August 4-7, 2011, upon his receipt of the Joseph D. Matarazzo Award for Distinguished Contributions to Psychology in Academic Health Centers presented by the Association of Psychologists in Academic Health Centers. This article relates the history, roles, and responsibilities of psychologists in academic health centers to the ultimate survival and success of professional psychology. It describes implications of the Patient Protection and Affordable Care Act (ACA) on the institutional practice of psychology including how psychology's place in academic health centers positions the field well for the future of healthcare reform. The article provides several recommendations to help professional psychology prepare for that future of integrated, interprofessional healthcare.

Comprehensive computerized diabetes registry. Serving the Cree of Eeyou Istchee (eastern James Bay).

PubMed Central

Dannenbaum, D.; Verronneau, M.; Torrie, J.; Smeja, H.; Robinson, E.; Dumont, C.; Kovitch, I.; Webster, T.

1999-01-01

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. The database will also identify patients not receiving appropriate clinical and laboratory screening for diabetic complications, and will provide standardized clinical flow sheets for routine patient management. MAIN COMPONENTS OF PROGRAM: The CBHSSJB diabetes registry uses a system of paper registration forms and clinical flow sheets kept in the nine community clinics. Information from these sheets is entered into a computer database annually. The flow sheets serve as a guideline for appropriate management of patients with diabetes, and provide a one-page summary of relevant clinical and laboratory information. CONCLUSIONS: A diabetes registry is vital to follow the progression of diabetes and diabetic complications in the region served by the CBHSSJB. The registry system incorporates both a means for regional epidemiologic monitoring of diabetes mellitus and clinical tools for managing patients with the disease. PMID:10065310

The Armed Forces Health Surveillance Center: enhancing the Military Health System's public health capabilities.

PubMed

DeFraites, Robert F

2011-03-04

Since its establishment in February 2008, the Armed Forces Health Surveillance Center (AFHSC) has embarked on a number of initiatives and projects in collaboration with a variety of agencies in the Department of Defense (DoD), other organizations within the federal government, and non-governmental partners. In 2009, the outbreak of pandemic H1N1 influenza attracted the major focus of the center, although notable advances were accomplished in other areas of interest, such as deployment health, mental health and traumatic brain injury surveillance.

Advancing Mental Health Research: Washington University's Center for Mental Health Services Research

ERIC Educational Resources Information Center

Proctor, Enola K.; McMillen, Curtis; Haywood, Sally; Dore, Peter

2008-01-01

Research centers have become a key component of the research infrastructure in schools of social work, including the George Warren Brown School of Social Work at Washington University. In 1993, that school's Center for Mental Health Services Research (CMHSR) received funding from the National Institute of Mental Health (NIMH) as a Social Work…

75 FR 55588 - Family-to-Family Health Information Center Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-13

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Health Resources and Services Administration Family-to-Family Health Information Center Program AGENCY: Health Resources and Services Administration, HHS... Florida Family-to-Family Health Information Center (F2F HIC) grant (H84MC00006) from the Florida Institute...

Data Quality in Rare Diseases Registries.

PubMed

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

2017-01-01

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

Oral health knowledge of health care workers in special children's center.

PubMed

Wyne, Amjad; Hammad, Nouf; Splieth, Christian

2015-01-01

To determine the oral health knowledge of health care workers in special children's center. A self-administered questionnaire was used to collect following information: demographics, oral hygiene practices, importance of fluoride, dental visits, cause of tooth decay, gingival health, and sources of oral health information. The study was conducted at Riyadh Center for Special Children in Riyadh City from December 2013 to May 2014. All 60 health care workers in the center completed the questionnaire. A great majority (95%) of the workers brushed their teeth twice or more daily. More than two-third (71.7%) of the workers knew that fluoride helps in caries prevention. One in five (21.7%) workers thought that a dental visit only becomes necessary in case of a dental problem. Similarly, 13.3% of the workers thought to "wait till there is some pain in case of a dental cavity" before seeking dental treatment. The workers ranked soft drinks/soda (98.3%), flavored fizzy drinks (60%) and sweetened/flavored milks (43.3%) as top three cariogenic drinks. A great majority (95%) of the workers correctly responded that blood on toothbrush most probably is a sign of "gum disease". Dentists (50%) and media (45%) were the main source of their oral health information. There was no significant difference (p > 0.05) in workers' response in relation to their specific job. The special health care workers in the disabled children's center generally had satisfactory oral health knowledge and practices.

Experiential Learning: A Review of College Health Centers

ERIC Educational Resources Information Center

Greaney, Elizabeth J.

2010-01-01

This exploratory study was conducted using a descriptive design and examined the use of college health centers for academic internships and clinical rotations. In addition, the study examined the relationship among health center director and school characteristics and the presence of academic internships or clinical rotations and the directors'…

78 FR 49357 - National Health Center Week, 2013

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-14

... America A Proclamation Community health centers play a critical role in providing affordable, high-quality... people living in the United States depends on their services. They are an important source of jobs in... extend our thanks to the women and men who operate America's health centers. NOW, THEREFORE, I, BARACK...

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

PubMed

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

2018-03-28

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

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

PubMed

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

2017-09-01

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

Breast Cancer and African Ancestry: Lessons Learned at the 10-Year Anniversary of the Ghana-Michigan Research Partnership and International Breast Registry

PubMed Central

Jiagge, Evelyn; Oppong, Joseph Kwaku; Bensenhaver, Jessica; Aitpillah, Francis; Gyan, Kofi; Kyei, Ishmael; Osei-Bonsu, Ernest; Adjei, Ernest; Ohene-Yeboah, Michael; Toy, Kathy; Jackson, Karen Eubanks; Akpaloo, Marian; Acheampong, Dorcas; Antwi, Beatrice; Agyeman, Faustina Obeng; Alhassan, Zainab; Fondjo, Linda Ahenkorah; Owusu-Afriyie, Osei; Brewer, Robert Newman; Gyamfuah, Amma; Salem, Barbara; Johnson, Timothy; Wicha, Max; Merajver, Sofia; Kleer, Celina; Pang, Judy; Amankwaa-Frempong, Emmanuel; Stark, Azadeh; Abantanga, Francis; Awuah, Baffour

2016-01-01

Women with African ancestry in western, sub-Saharan Africa and in the United States represent a population subset facing an increased risk of being diagnosed with biologically aggressive phenotypes of breast cancer that are negative for the estrogen receptor, the progesterone receptor, and the HER2/neu marker. These tumors are commonly referred to as triple-negative breast cancer. Disparities in breast cancer incidence and outcome related to racial or ethnic identity motivated the establishment of the International Breast Registry, on the basis of partnerships between the Komfo Anokye Teaching Hospital in Kumasi, Ghana, the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan, and the Henry Ford Health System in Detroit, Michigan. This research collaborative has featured educational training programs as well as scientific investigations related to the comparative biology of breast cancer in Ghanaian African, African American, and white/European American patients. Currently, the International Breast Registry has expanded to include African American patients throughout the United States by partnering with the Sisters Network (a national African American breast cancer survivors’ organization) and additional sites in Ghana (representing West Africa) as well as Ethiopia (representing East Africa). Its activities are now coordinated through the Henry Ford Health System International Center for the Study of Breast Cancer Subtypes. Herein, we review the history and results of this international program at its 10-year anniversary. PMID:28717716

[Clinical trials registry].

PubMed

Ryder, Elena

2004-12-01

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

Planning for the Mercy Center for Breast Health.

PubMed

Olivares, V Ed

2002-01-01

During the last months of 2000, administrators at the Mercy San Juan Medical Center in Carmichael, Calif., convened a steering committee to plan the Mercy Center for Breast Health. The Steering Committee was composed of the director of ancillary and support services, the oncology clinical nurse specialist, the RN manager of the oncology nursing unit, the RN surgery center manager, and me, the manager of imaging services. The committee was responsible for creating a new business with five specific objectives: to position the Center as a comprehensive diagnostic and resource center for women; to generate physician referrals to the Breast Center through various vehicles; to create awareness of the Breast Center's capabilities among area radiologists; to create awareness of the Breast Center among employees of six sister facilities; to create "brand awareness" for the Mercy Center for Breast Health among referring physicians and patients who could use competing centers in the area. The Steering Committee's charter was to design a center with a feminine touch and ambience and to provide a "one-stop shopping" experience for patients. A major component of the Breast Center is the Dianne Haselwood Resource Center, which provides patients with educational support and information. The Steering Committee brought its diverse experience and interests to bear on arranging for equipment acquisition, information and clerical systems, staffing, clinic office design, patient care and marketing. Planning the Mercy Center for Breast Health has been a positive challenge that brought together many elements of the organization and people from different departments and specialties to create a new business venture. Our charge now is to grow and to live up to our vision of offering complete breast diagnostic, education and support services in one location.

Nurse-midwives in federally funded health centers: understanding federal program requirements and benefits.

PubMed

Carter, Martha

2012-01-01

Midwives are working in federally funded health centers in increasing numbers. Health centers provide primary and preventive health care to almost 20 million people and are located in every US state and territory. While health centers serve the entire community, they also serve as a safety net for low-income and uninsured individuals. In 2010, 93% of health center patients had incomes below 200% of the Federal Poverty Guidelines, and 38% were uninsured. Health centers, including community health centers, migrant health centers, health care for the homeless programs, and public housing primary care programs, receive grant funding and enjoy other benefits due to status as federal grantees and designation as federally qualified health centers. Clinicians working in health centers are also eligible for financial and professional benefits because of their willingness to serve vulnerable populations and work in underserved areas. Midwives, midwifery students, and faculty working in, or interacting with, health centers need to be aware of the regulations that health centers must comply with in order to qualify for and maintain federal funding. This article provides an overview of health center regulations and policies affecting midwives, including health center program requirements, scope of project policy, provider credentialing and privileging, Federal Tort Claims Act malpractice coverage, the 340B Drug Pricing Program, and National Health Service Corps scholarship and loan repayment programs. © 2012 by the American College of Nurse-Midwives.

Burden of traumatic injuries in Saudi Arabia: lessons from a major trauma registry in Riyadh, Saudi Arabia.

PubMed

Alghnam, Suliman; Alkelya, Muhamad; Al-Bedah, Khalid; Al-Enazi, Saleem

2014-01-01

In Saudi Arabia (SA), injuries are the second leading cause of death; however, little is known about their frequencies and outcomes. Trauma registries play a major role in measuring the burden on population health. This study aims to describe the population of the only hospital-based trauma registry in the country and highlight challenges and potential opportunities to improve trauma data collection and research in SA. Using data between 2001 and 2010, this retrospective study included patients from a large trauma center in Riyadh, SA. A staff nurse utilized a structured checklist to gather information on patients' demographic, physiologic, anatomic, and outcome variables. Basic descriptive statistics by age group ( 14 years) were calculated, and differences were assessed using student t and chi-square tests. In addition, the mechanism of injury and the frequency of missing data were evaluated. 10 847 patients from the trauma registry were included. Over 9% of all patients died either before or after being treated at the hospital. Patients who were older than 14 years of age (more likely to be male) sustained traffic-related injuries and died in the hospital as compared to patients who were younger than or equal to years of age. Deceased patients were severely injured as measured by injury severity score and Glasgow Coma Scale (P < .001). Overall, the most frequent type of injury was related to traffic (52.0%), followed by falls (23.4%). Missing values were mostly prevalent in traffic-related variables, such as seatbelt use (70.2%). This registry is a key step toward addressing the burden of injuries in SA. Improved injury classification using the International Classification of Disease-external cause codes may improve the quality of the registry and allow comparison with other populations. Most importantly, injury prevention in SA requires further investment in data collection and research to improve outcomes.

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The NeuroAiD Safe Treatment (NeST) Registry: a protocol

PubMed Central

Venketasubramanian, Narayanaswamy; Kumar, Ramesh; Soertidewi, Lyna; Abu Bakar, Azizi; Laik, Carine; Gan, Robert

2015-01-01

Introduction NeuroAiD (MLC601, MLC901), a combination of natural products, has been shown to be safe and to aid neurological recovery after brain injuries. The NeuroAiD Safe Treatment (NeST) Registry aims to assess its use and safety in the real-world setting. Methods and analysis The NeST Registry is designed as a product registry that would provide information on the use and safety of NeuroAiD in clinical practice. An online NeST Registry was set up to allow easy entry and retrieval of essential information including demographics, medical conditions, clinical assessments of neurological, functional and cognitive state, compliance, concomitant medications, and side effects, if any, among patients on NeuroAiD. Patients who are taking or have been prescribed NeuroAiD may be included. Participation is voluntary. Data collected are similar to information obtained during standard care and are prospectively entered by the participating physicians at baseline (before initialisation of NeuroAiD) and during subsequent visits. The primary outcome assessed is safety (ie, non-serious and serious adverse event), while compliance and neurological status over time are secondary outcomes. The in-person follow-up assessments are timed with clinical appointments. Anonymised data will be extracted and collectively analysed. Initial target sample size for the registry is 2000. Analysis will be performed after every 500 participants entered with completed follow-up information. Ethics and dissemination Doctors who prescribe NeuroAiD will be introduced to the registry by local partners. The central coordinator of the registry will discuss the protocol and requirements for implementation with doctors who show interest. Currently, the registry has been approved by the Ethics Committees of Universiti Kebangsaan Malaysia (Malaysia) and National Brain Center (Indonesia). In addition, for other countries, Ethics Committee approval will be obtained in accordance with local requirements. Trial

Health consequences of road accidents: insights from local health authority registries.

PubMed

Bertoncello, C; Furlan, P; Baldovin, T; Marcolongo, A; Casale, P; Cocchio, S; Buja, A; Baldo, V

2013-01-01

Road accidents are a major public health problem that affect all age groups but their impact is most striking among the young. The aim of this study is to quantify the burden of road traffic injuries, their mortality and direct in-patient economic costs and to identify the age classes at highest risk for severe road traffic injuries, through analysis of data collected by information systems of an Italian Local Health Authority. The study was conducted in a Local Health Authority of Veneto Region. Injured people were selected from Emergency Department (2006-2010). Data were linked to the Hospital Information System for hospital admissions and to the Mortality Registry to check 30-day mortality. The direct costs associated to hospitalizations were estimated through Diagnosis Related Group reimbursement rates. Multivariate analysis was performed using hospitalization and mortality as the dependent variables and gender, age, day of week when accident occurred as the independent variables. Traffic injury, hospitalization and mortality incidence rates were calculated by gender and age per 100,000 residents per year. The road traffic injuries were 9,192, decreasing from 2,112 in 2006 to 1,980 in 2010. Among injured persons 55.3% were male (68.1% among 15-19 age class); 41.7% young people aged 15-34 years (43.9% among male, 39.0% among female). Total hospitalisation rate was 5.9%. Overall mortality rate was 0.3% (0.9% among aged 65 or older). The cost of hospital admission was euro 2,742,505 (hospitalization mean cost euro 5,097). Risk of hospitalization and death was higher in male, in elderly and during week end. Young people aged 15-19 had the highest incidence of visits (2,258.4 per 100,000) and high hospitalisation weekend and mortality rates (respectively 101.5 and 8.5). Analysis at local level, using current data sources, permits to estimate the burden of injuries caused by road-traffic, to describe the characteristics of injured persons and finally to estimate

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New York State Health Foundation grant helps health centers win federal expansion funds.

PubMed

Sandman, David; Cozine, Maureen

2012-11-01

With approximately 1.2 million New Yorkers poised to gain health insurance coverage as a result of federal health reform, demand for primary care services is likely to increase greatly. The Affordable Care Act includes $11 billion in funding to enhance primary care access at community health centers. Recognizing a need and an opportunity, in August 2010 the New York State Health Foundation made a grant of nearly $400,000 to the Community Health Care Association of New York State to work with twelve health centers to develop successful proposals for obtaining and using these federal funds. Ultimately, eleven of the twelve sites are expected to receive $25.6 million in federal grants over a five-year period-a sixty-four-fold return on the foundation's investment. This article describes the strategy for investing in community health centers; identifies key project activities, challenges, and lessons; and highlights its next steps for strengthening primary care.

Review of U.S. registries for psoriasis.

PubMed

Amin, Mina; No, Daniel J; Wu, Jashin J

2017-12-01

Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

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

PubMed

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

2017-01-01

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

Kennedy Space Center environmental health program

NASA Technical Reports Server (NTRS)

Marmaro, G. M.; Cardinale, M. A.; Summerfield, B. R.; Tipton, D. A.

1992-01-01

The Kennedy Space Center's environmental health organization is responsible for programs which assure its employees a healthful workplace under diverse and varied working conditions. These programs encompass the disciplines of industrial hygiene, radiation protection (health physics), and environmental sanitation/pollution control. Activities range from the routine, such as normal office work, to the highly specialized, such as the processing of highly toxic and hazardous materials.

The development of the NZ-based international upper limb surgery registry.

PubMed

Sinnott, K A; Dunn, J A; Rothwell, A G; Hall, A S; Post, M W M

2014-08-01

Implementation study. To describe the development and potential value of the New Zealand (NZ) upper limb surgery registry and report the demographic and spinal cord injury characteristics of individuals with tetraplegia collated to date. Multi Center-coordinated from Burwood Spinal Unit, NZ. Following discussions with eight international units, clinical information and outcomes measures were agreed upon for use in this specific population. To implement this consensus, a web-based upper limb surgery registry was developed in NZ. Inclusion criteria included referral to a hand clinic for clinical assessment for suitability for tendon transfer surgery. Clinical data were collected regardless of acceptance of surgery thereby creating a self-selected control group. Twenty-eight years of retrospective NZ data was entered into the registry, as well as 3 years of prospective data collected in NZ. From 1982 to 2013, a total of 357 persons with tetraplegia were assessed as suitable for surgery. Of those, 223 individuals underwent surgery and 134 declined the intervention(s). The prospective group currently comprises 55 assessments with 23 surgery individuals and 32 who have declined surgery to date. Clinical information is now available within a web-based registry for all individuals reviewed in hand clinics from when upper limb surgery was first introduced. A broad range of outcomes of interest can easily be reported directly from the registry. The self-selected control group will allow comparative studies to be explicitly linked to the specific interventions of interest.

Agency for Toxic Substances and Disease Registry Brownfields/ land-reuse site tool.

PubMed

Perlman, Gary D; Berman, Laurel; Leann, Kathryn; Bing, Lemley

2012-12-01

As part of our continuing effort to highlight innovative approaches to improving the health and environment of communities, the Journal is pleased to bring back the bimonthly column from the U.S. Agency for Toxic Substances and Disease Registry (ATSDR). The ATSDR, based in Atlanta, Georgia, is a federal public health agency of the U.S. Department of Health and Human Services and shares a common office of the Director with the National Center for Environmental Health at the Centers for Disease Control and Prevention (CDC). ATSDR serves the public by using the best science, taking responsive public health actions, and providing trusted health information to prevent harmful exposures and diseases related to toxic substances. The purpose of this column is to inform readers of ATSDR's activities and initiatives to better understand the relationship between exposure to hazardous substances in the environment and their impact on human health and how to protect public health. We believe that the column will provide a valuable resource to our readership by helping to make known the considerable resources and expertise that ATSDR has available to assist communities, states, and others to assure good environmental health practice for all is served. The conclusions of this article are those of the author(s) and do not necessarily represent the views of ATSDR, CDC, or the U.S. Department of Health and Human Services. Gary D. Perlman is an environmental health scientist for ATSDR. He is a commissioned officer with the U.S. Public Health Service and has been deployed in support of numerous environmental disasters including hurricanes Katrina, Rita, Isabelle, and Irene, as well as the Deepwater Horizon oil spill. Laurel Berman is the national brownfields coordinator with ATSDR. She coordinates the ATSDR Brownfields/Land-Reuse Health Initiative. Kathryn Leann Lemley Bing is an environmental health scientist and an ATSDR regional representative in Atlanta. She has specialized

Multi-Center, Community-Based Cardiac Implantable Electronic Devices Registry: Population, Device Utilization, and Outcomes.

PubMed

Gupta, Nigel; Kiley, Mary Lou; Anthony, Faith; Young, Charlie; Brar, Somjot; Kwaku, Kevin

2016-03-09

The purpose of this study is to describe key elements, clinical outcomes, and potential uses of the Kaiser Permanente-Cardiac Device Registry. This is a cohort study of implantable cardioverter defibrillators (ICD), pacemakers (PM), and cardiac resynchronization therapy (CRT) devices implanted between January 1, 2007 and December 31, 2013 by ≈400 physicians in 6 US geographical regions. Registry data variables, including patient characteristics, comorbidities, indication for procedures, complications, and revisions, were captured using the healthcare system's electronic medical record. Outcomes were identified using electronic screening algorithms and adjudicated via chart review. There were 11 924 ICDs, 33 519 PMs, 4472 CRTs, and 66 067 leads registered. A higher proportion of devices were implanted in males: 75.1% (ICD), 55.0% (PM), and 66.7% (CRT), with mean patient age 63.2 years (ICD), 75.2 (PM), and 67.2 (CRT). The 30-day postoperative incidence of tamponade, hematoma, and pneumothorax were ≤0.3% (ICD), ≤0.6% (PM), and ≤0.4% (CRT). Device failures requiring revision occurred at a rate of 2.17% for ICDs, 0.85% for PMs, and 4.93% for CRTs, per 100 patient observation years. Superficial infection rates were <0.03% for all devices; deep infection rates were 0.6% (ICD), 0.5% (PM), and 1.0% (CRT). Results were used to monitor vendor-specific variations and were systematically shared with individual regions to address potential variations in outcomes, utilization, and to assist with the management of device recalls. The Kaiser Permanente-Cardiac Device Registry is a robust tool to monitor postprocedural patient outcomes and postmarket surveillance of implants and potentially change practice patterns. © 2016 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley Blackwell.

Forging stronger partnerships between academic health centers and patient-driven organizations.

PubMed

Gallin, Elaine K; Bond, Enriqueta; Califf, Robert M; Crowley, William F; Davis, Pamela; Galbraith, Richard; Reece, E Albert

2013-09-01

In this article, the authors review the unique role that patient-driven organizations, such as patient advocacy groups and voluntary health organizations (PAG/VHOs), play in translational and clinical research. The importance of fostering collaborations between these organizations and U.S. academic health centers (AHCs) is also discussed. Although both the PAG/VHO community and AHCs are heterogeneous, and although not all organizations are well governed or provide independent, well-researched views, there are many outstanding, well-managed, independent PAG/VHOs in the United States whose missions overlap with those of AHCs. The characteristics of effective PAG/VHOs that would serve as excellent partners for AHCs are discussed, and examples are provided regarding their many contributions, which have included advancing research on rare diseases, recruiting patients for clinical trials, and establishing patient registries and biospecimen banks. The authors present feedback obtained from informal discussions with PAG/VHO staff, as well as a survey of a small sample of organizations, that has identified bureaucratic processes, negotiating intellectual property rights, and institutional review board (IRB) delays as the most problematic areas of interactions with AHCs. Actions are suggested for building effective partnerships between the two sectors and the activities that AHCs should undertake to facilitate their interactions with PAG/VHOs including streamlining contract review and IRB processes and finding ways to better align the incentives motivating academic clinical and translational investigators with the goals of PAG/VHOs. This article is one product of the Clinical Research Forum's Partnering with Patient Advocacy Groups Initiative.

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

PubMed Central

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

2016-01-01

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

Access to Oral Health Care: The Role of Federally Qualified Health Centers in Addressing Disparities and Expanding Access

PubMed Central

Shi, Leiyu; Hayashi, Arthur Seiji; Sharma, Ravi; Daly, Charles; Ngo-Metzger, Quyen

2013-01-01

Objectives. We examined utilization, unmet need, and satisfaction with oral health services among Federally Qualified Health Center patients. We examined correlates of unmet need to guide efforts to increase access to oral health services among underserved populations. Methods. Using the 2009 Health Center Patient Survey, we performed multivariate logistic regressions to examine factors associated with access to dental care at health centers, unmet need, and patient experience. Results. We found no racial or ethnic disparities in access to timely oral health care among health center patients; however, uninsured patients and those whose insurance does not provide dental coverage experienced restricted access and greater unmet need. Slightly more than half of health center patients had a dental visit in the past year, but 1 in 7 reported that their most recent visit was at least 5 years ago. Among health center patients who accessed dental care at their health center, satisfaction was high. Conclusions. These results underscore the critical role that health centers play in national efforts to improve oral health status and eliminate disparities in access to timely and appropriate dental services. PMID:23327254

Patient-centered medical home model: do school-based health centers fit the model?

PubMed

Larson, Satu A; Chapman, Susan A

2013-01-01

School-based health centers (SBHCs) are an important component of health care reform. The SBHC model of care offers accessible, continuous, comprehensive, family-centered, coordinated, and compassionate care to infants, children, and adolescents. These same elements comprise the patient-centered medical home (PCMH) model of care being promoted by the Affordable Care Act with the hope of lowering health care costs by rewarding clinicians for primary care services. PCMH survey tools have been developed to help payers determine whether a clinician/site serves as a PCMH. Our concern is that current survey tools will be unable to capture how a SBHC may provide a medical home and therefore be denied needed funding. This article describes how SBHCs might meet the requirements of one PCMH tool. SBHC stakeholders need to advocate for the creation or modification of existing survey tools that allow the unique characteristics of SBHCs to qualify as PCMHs.

Johnson Space Center Health and Medical Technical Authority

NASA Technical Reports Server (NTRS)

Fogarty, Jennifer A.

2010-01-01

1.HMTA responsibilities: a) Assure program/project compliance with Agency health and medical requirements at identified key decision points. b) Certify that programs/projects comply with Agency health and medical requirements prior to spaceflight missions. c) Assure technical excellence. 2. Designation of applicable NASA Centers for HMTA implementation and Chief Medical Officer (CMO) appointment. 3. Center CMO responsible for HMTA implementation for programs and projects at the center. JSC HMTA captured in "JSC HMTA Implementation Plan". 4. Establishes specifics of dissenting opinion process consistent with NASA procedural requirements.

Utilization of Mental Health Services in School-Based Health Centers.

PubMed

Bains, Ranbir M; Cusson, Regina; White-Frese, Jesse; Walsh, Stephen

2017-08-01

We summarize utilization patterns for mental health services in school-based health centers. Administrative data on school-based health center visits in New Haven, Connecticut were examined for the 2007-2009 school years. Relative frequencies of mental health visits by age were calculated as a percentage of all visits and were stratified by sex, ethnicity/race, and insurance status. Mental health visits accounted for the highest proportion of visits (31.8%). The proportion of mental health visits was highest at 8 years (42.8%) and at 13 years (39.0%). The proportion of mental health visits among boys (38.4%) was higher than among girls (26.7%). Hispanic students had a lower proportion of mental health visits than black students (23.5% vs 35.8%) in all but 2 age groups. Students in the white/other ethnicity category had higher proportions of mental health visits than Hispanic and black students between ages 12 and 15. Students with no health insurance (22.5%) had lower proportions of mental health visits than students covered by Medicaid (34.3%) or private insurance (33.9%). The percentage of mental health visits by students with private insurance was highest (37.2%-49%) in the 13-15 age range. Usage patterns for mental health issues show pronounced, nonrandom variation relative to age and other demographic characteristics especially with 8-year-old boys. © 2017, American School Health Association.

Study of young patients with myocardial infarction: Design and rationale of the YOUNG-MI Registry.

PubMed

Singh, Avinainder; Collins, Bradley; Qamar, Arman; Gupta, Ankur; Fatima, Amber; Divakaran, Sanjay; Klein, Josh; Hainer, Jon; Jarolim, Petr; Shah, Ravi V; Nasir, Khurram; Di Carli, Marcelo F; Bhatt, Deepak L; Blankstein, Ron

2017-11-01

The YOUNG-MI registry is a retrospective study examining a cohort of young adults age ≤ 50 years with a first-time myocardial infarction. The study will use the robust electronic health records of 2 large academic medical centers, as well as detailed chart review of all patients, to generate high-quality longitudinal data regarding the clinical characteristics, management, and outcomes of patients who experience a myocardial infarction at a young age. Our findings will provide important insights regarding prevention, risk stratification, treatment, and outcomes of cardiovascular disease in this understudied population, as well as identify disparities which, if addressed, can lead to further improvement in patient outcomes. © 2017 Wiley Periodicals, Inc.

Toxic Substances Registry System: Index of Material Safety Data Sheets. Revised

NASA Technical Reports Server (NTRS)

1998-01-01

The January 1998 revision of the Index of Materials Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

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

PubMed

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

2018-06-25

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

The Oral Health Care Manager in a Patient-Centered Health Facility.

PubMed

Theile, Cheryl Westphal; Strauss, Shiela M; Northridge, Mary Evelyn; Birenz, Shirley

2016-06-01

The dental hygienist team member has an opportunity to coordinate care within an interprofessional practice as an oral health care manager. Although dental hygienists are currently practicing within interprofessional teams in settings such as pediatric offices, hospitals, nursing homes, schools, and federally qualified health centers, they often still assume traditional responsibilities rather than practicing to the full extent of their training and licenses. This article explains the opportunity for the dental hygiene professional to embrace patient-centered care as an oral health care manager who can facilitate integration of oral and primary care in a variety of health care settings. Based on an innovative model of collaboration between a college of dentistry and a college of nursing, an idea emerged among several faculty members for a new management method for realizing continuity and coordination of comprehensive patient care. Involved faculty members began working on the development of an approach to interprofessional practice with the dental hygienist serving as an oral health care manager who would address both oral health care and a patient's related primary care issues through appropriate referrals and follow-up. This approach is explained in this article, along with the results of several pilot studies that begin to evaluate the feasibility of a dental hygienist as an oral health care manager. A health care provider with management skills and leadership qualities is required to coordinate the interprofessional provision of comprehensive health care. The dental hygienist has the opportunity to lead closer integration of oral and primary care as an oral health care manager, by coordinating the team of providers needed to implement comprehensive, patient-centered care. Copyright © 2016 Elsevier Inc. All rights reserved.

The Armed Forces Health Surveillance Center: enhancing the Military Health System’s public health capabilities

PubMed Central

2011-01-01

Since its establishment in February 2008, the Armed Forces Health Surveillance Center (AFHSC) has embarked on a number of initiatives and projects in collaboration with a variety of agencies in the Department of Defense (DoD), other organizations within the federal government, and non-governmental partners. In 2009, the outbreak of pandemic H1N1 influenza attracted the major focus of the center, although notable advances were accomplished in other areas of interest, such as deployment health, mental health and traumatic brain injury surveillance. PMID:21388560

78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-09

... CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs... communication with our many and diverse stakeholders. To join the registry and receive messages, stakeholders... subscriptions may access the expanded registry at: https://public.govdelivery.com/accounts/USDAAPHIS/subscriber...

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

PubMed

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

2017-01-01

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

Linking a Total Ankle Arthroplasty Registry to Medicare Inpatient Claims without Unique Identifiers.

PubMed

Raman, Sudha R; Hammill, Bradley G; Queen, Robin M; Adams, Samuel B; Curtis, Lesley H

2018-06-20

Linking clinical registries to administrative claims data enables researchers to capitalize on the specific strengths of each data source with respect to the depth, breadth, and completeness of information. The objectives of this study were to link a health-system-based orthopaedic surgery registry to U.S. Medicare claims data without the use of unique identifiers and to assess the representativeness of the linked records. The registry included clinical data for patients ≥65 years of age who underwent elective, inpatient total ankle arthroplasty (TAA) in a single health system during the period of 2007 through 2012. Registry participants were identified within the Medicare data by linking registry procedures to TAA procedures within the claims data using a combination of procedure date, patient date of birth, and patient sex. We assessed the representativeness of the linked records by comparing them to both unlinked registry records and unlinked Medicare records for TAA procedures. Additionally, we described the availability of postsurgical data for linked records. Of 360 TAA registry participants ≥65 years of age, 280 (77.8%) were matched to a Medicare record; 250 (89.3%) of those 280 participants were matched on the basis of a linking rule that required an exact match for procedure date, date of birth, and sex. The 280 linked records comprised 5.5% of all Medicare TAA procedures among beneficiaries ≥65 years of age enrolled in the fee-for-service Medicare program (n = 5,070). Compared with linked records, unlinked records were more likely to be for patients 65 to 69 years old, but the 2 groups were similar in terms of sex, body mass index, and availability of clinical measurements. Of the linked records, 214 (76.4%) had ≥3 years of postoperative follow-up claims data. Linkage without unique patient identifiers between an orthopaedic registry and Medicare claims data is feasible, allows for assessment of representativeness, and creates a unique resource of

Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

PubMed

Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

2017-07-01

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.

Why Mental Health Centers Should Not Do Home-Based Family Centered Services.

ERIC Educational Resources Information Center

Leverington, John J.; Bryce, Marvin

Home Based Family Centered (HBFC) services give primary responsibility for evaluation, service planning, and counseling to the direct service in-home family therapist. In the mental health center (MHC), the psychiatrist may see a child once in the office and make a diagnosis and recommendation for the child, and sometimes for the parents. Also in…

Occupational Health in Community Health Centers: Practitioner Challenges and Recommendations.

PubMed

Simmons, Juliana M; Liebman, Amy K; Sokas, Rosemary K

2018-05-01

Primary care clinicians may be the only source of occupational healthcare for many low-wage, high-risk workers who experience disproportionate occupational hazards. The authors explored barriers to providing occupational healthcare and recommendations for overcoming these challenges. The team conducted six focus groups and eleven key-informant interviews in two community health centers and among clinicians, community health workers, and other personnel from similar settings. Clinicians reported not utilizing occupational information during clinical encounters and identified competing priorities, limited appointment time, and lack of training as key barriers. They cited workers' compensation as a source of confusion and frustration. However, most participants recognized occupation as an important social determinant of health and expressed interest in additional training and resources. Participants agreed that referral mechanisms for occupational medicine specialists and worker centers and changes in quality performance measures and electronic health records would be useful and that workers' compensation and immigration policies need reform.

Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: a cross-sectional study.

PubMed

Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

2008-05-14

Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. We conducted two evaluations - one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry - of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11-17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were older at their first visit to

Toxic Substances Registry System: Index of Material Safety Data Sheets. Revised

NASA Technical Reports Server (NTRS)

1997-01-01

The October 1997 revision of the Index of Material Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on the hazards, use, and chemical composition of materials stored and used at KSC.

Assessment of Quality Indicators for Acute Myocardial Infarction in the FAST-MI (French Registry of Acute ST-Elevation or Non-ST-Elevation Myocardial Infarction) Registries.

PubMed

Schiele, François; Gale, Chris P; Simon, Tabassome; Fox, Keith A A; Bueno, Hector; Lettino, Maddalena; Tubaro, Marco; Puymirat, Etienne; Ferrières, Jean; Meneveau, Nicolas; Danchin, Nicolas

2017-06-01

The Acute Cardiovascular Care Association defined quality indicators (QIs) for the management of acute myocardial infarction. The application of these QIs to existing databases is appealing. It remains to be determined what the rates of implementation are, how the QIs are related to long-term survival, and whether quality categorization is possible. The QIs were extracted from the French nationwide registries French Registry of Acute ST-Elevation or Non-ST-Elevation Myocardial Infarction (FAST-MI) 2005 (n=3670) and FAST-MI 2010 (n=4169). Implementation rates for each QI are reported for both cohorts. The composite QI was used for benchmarking, and the relationship between QIs and 3-year survival was determined using a Cox model. In FAST-MI 2010, 12 individual and 2 composite QIs could be assessed. Four QIs were not recorded in FAST-MI 2010 and 4 in 2005, either because of treatment nonavailability or because of data not recorded. The degree of implementation ranged from 12% to 89%, with higher rates in 2010 as compared with 2005. Seven individual QIs were associated with survival, and there was a significant and gradual association between survival and categories of the composite QI. Center categorization was possible in 26% to 30% of participating centers; 16 (27%) centers in 2005 and 14 (20%) in 2010 were categorized as low quality. Twelve of 17 individual QIs could be assessed from FAST-MI 2010. The composite QI was significantly associated with 3-year survival and distinguished centers with high, average, and low quality of care. © 2017 American Heart Association, Inc.

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

PubMed

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

2014-05-01

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

Health Care Use and Spending for Medicaid Enrollees in Federally Qualified Health Centers Versus Other Primary Care Settings

PubMed Central

Lee, Sang Mee; Sharma, Ravi; Ngo-Metzger, Quyen; Mukamel, Dana B.; Gao, Yue; White, Laura M.; Shi, Leiyu; Chin, Marshall H.; Laiteerapong, Neda; Huang, Elbert S.

2016-01-01

Objectives. To compare health care use and spending of Medicaid enrollees seen at federally qualified health centers versus non–health center settings in a context of significant growth. Methods. Using fee-for-service Medicaid claims from 13 states in 2009, we compared patients receiving the majority of their primary care in federally qualified health centers with propensity score–matched comparison groups receiving primary care in other settings. Results. We found that health center patients had lower use and spending than did non–health center patients across all services, with 22% fewer visits and 33% lower spending on specialty care and 25% fewer admissions and 27% lower spending on inpatient care. Total spending was 24% lower for health center patients. Conclusions. Our analysis of 2009 Medicaid claims, which includes the largest sample of states and more recent data than do previous multistate claims studies, demonstrates that the health center program has provided a cost-efficient setting for primary care for Medicaid enrollees. PMID:27631748

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

PubMed Central

2013-01-01

Background Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition. Results We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted

NASA Human Health and Performance Center (NHHPC)

NASA Technical Reports Server (NTRS)

Davis, J. R.; Richard, E. E.

2010-01-01

The NASA Human Health and Performance Center (NHHPC) will provide a collaborative and virtual forum to integrate all disciplines of the human system to address spaceflight, aviation, and terrestrial human health and performance topics and issues. The NHHPC will serve a vital role as integrator, convening members to share information and capture a diverse knowledge base, while allowing the parties to collaborate to address the most important human health and performance topics of interest to members. The Center and its member organizations will address high-priority risk reduction strategies, including research and technology development, improved medical and environmental health diagnostics and therapeutics, and state-of-the art design approaches for human factors and habitability. Once full established in 2011, the NHHPC will focus on a number of collaborative projects focused on human health and performance, including workshops, education and outreach, information sharing and knowledge management, and research and technology development projects, to advance the study of the human system for spaceflight and other national and international priorities.

Quality registry, a tool for patient advantages - from a preventive caring perspective.

PubMed

Rosengren, Kristina; Höglund, Pär J; Hedberg, Berith

2012-03-01

The aim of this study was to describe nurses' experiences of a recently implemented quality register, Senior Alert, at two hospitals in Sweden. In Sweden, in recent decades, a system of national quality registries has been established in health and medical services for better outcomes for patients, professional development and a better functioning system. Senior Alert (SA) is one quality registry, aimed at preventing malnutrition, pressure ulcers and falls in elderly care. The study comprised a total of eight interviews with nurses working with SA at the ward level. The interviews were analysed using manifest qualitative content analysis. Respect for the individuals was a main concern in the study. All persons who were asked to participate in the study consented to do so. One category 'Patient Advantages' and three subcategories 'Conscious Persevering', 'Supporting Structure' and 'Committed Leadership' were identified to describe staff experiences of implementing SA. Implementation processes need to be sustainable at both staff and managerial levels. A key factor in implementing and using a quality registry in prevention care could be described as keeping the flame burning. However, further research is needed on how patient advantages could be developed using other quality registries in order to improve care from a patient perspective. The results of this study could help other organizations implement quality registries or other change processes, for example new guidelines and treatment. Strategies concerning organizational structure and committed leadership could increase the usefulness of knowledge systems on all levels, which could enable continuous learning and quality improvement in health care. © 2012 Blackwell Publishing Ltd.

Lung Transplantation in the Management of Patients with LAM:Baseline Data from the NHLBI LAM Registry

PubMed Central

Ryu, Jay; Beck, Gerald; Moss, Joel; Lee, Jar-Chi; Finlay, Geraldine; Brown, Kevin; Chapman, Jeffrey; McMahan, June; Olson, Eric; Ruoss, Stephen; Sherer, Susan; Maurer, Janet R; Ryu, Jay; Beck, Gerald; Moss, Joel; Lee, Jar-Chi; Finlay, Geraldine; Brown, Kevin; Chapman, Jeffrey; McMahan, June; Olson, Eric; Ruoss, Steven

2008-01-01

Background In 1997, the National Heart, Lung, and Blood Institute of the National Institutes of Health established a Registry to better characterize the demographic, clinical, physiologic and radiographic features of patients with LAM. We report here data collected at enrollment from patients who had either undergone transplant prior to enrollment, underwent transplant during the 5-year study, or were evaluated/waitlisted for lung transplant during the 5-year study. Methods The LAM Registry enrolled patients from six clinical centers between August 1998 and October 2001. On entry patients filled out questionnaires covering medical history, symptoms, treatment and quality of life (SF-36 and St. George’s Respiratory Questionnaire). Enrollees underwent blood laboratory work, arterial blood gases and pulmonary function testing. Follow-up was at six month and/or yearly intervals. Diagnoses were confirmed by biopsy or typical clinical presentation plus CT findings confirmed by independent expert radiologists. A total of 243 women were enrolled. Of those 13 (5.3%) had been transplanted at time of entry (Group A), 21 (8.6%) were transplanted during the study (Group B) and 48 (19.8%) were either waitlisted for transplant or underwent evaluation after enrollment during the study period (Group C). The remaining 161 (66.3%) registrants were neither considered for nor listed for transplant during the Registry period (Group D). Results One-third of patients in a large sample of LAM patients had either been transplanted or were being considered for transplant. At enrollment, patients who had already been transplanted and those not in need of transplant (Groups A and D) had better pulmonary function and quality of life scores compared to patients who subsequently underwent lung transplant during the Registry period (Group B). Conclusion In this large registry of LAM patients, lung transplantation appears to be associated both with significantly improved lung function and quality

Financial performance and managed care trends of health centers.

PubMed

Martin, Brian C; Shi, Leiyu; Ward, Ryan D

2009-01-01

Data were analyzed from the 1998-2004 Uniform Data System (UDS) to identify trends and predictors of financial performance (costs, productivity, and overall financial health) for health centers (HCs). Several differences were noted regarding revenues, self-sufficiency, service offerings, and urban/rural setting. Urban centers with larger numbers of clients, centers that treated high numbers of patients with chronic diseases, and centers with large numbers of prenatal care users were the most fiscally sound. Positive financial performance can be targeted through strategies that generate positive revenue, strive to decrease costs, and target services that are in demand.

Study protocol: The back pain outcomes using longitudinal data (BOLD) registry

PubMed Central

2012-01-01

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-reported outcome measures as well as

The organization and delivery of family planning services in community health centers.

PubMed

Goldberg, Debora Goetz; Wood, Susan F; Johnson, Kay; Mead, Katherine Holly; Beeson, Tishra; Lewis, Julie; Rosenbaum, Sara

2015-01-01

Family planning and related reproductive health services are essential primary care services for women. Access is limited for women with low incomes and those living in medically underserved areas. Little information is available on how federally funded health centers organize and provide family planning services. This was a mixed methods study of the organization and delivery of family planning services in federally funded health centers across the United States. A national survey was developed and administered (n = 423) and in-depth case studies were conducted of nine health centers to obtain detailed information on their approach to family planning. Study findings indicate that health centers utilize a variety of organizational models and staffing arrangements to deliver family planning services. Health centers' family planning offerings are organized in one of two ways, either a separate service with specific providers and clinic times or fully integrated with primary care. Health centers experience difficulties in providing a full range of family planning services. Major challenges include funding limitations; hiring obstetricians/gynecologists, counselors, and advanced practice clinicians; and connecting patients to specialized services not offered by the health center. Health centers play an integral role in delivering primary care and family planning services to women in medically underserved communities. Improving the accessibility and comprehensiveness of family planning services will require a combination of additional direct funding, technical assistance, and policies that emphasize how health centers can incorporate quality family planning as a fundamental element of primary care. Copyright © 2015 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

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

DTIC Science & Technology

2011-03-01

project effort is being directed to investigate possible associations between PD and toxicant exposure using state databases, to define disease ... prevalence and care patterns among registrants, and to assess the value of the registry to stakeholders.

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

DTIC Science & Technology

2012-03-01

project effort is being directed to investigate possible associations between PD and toxicant exposure using state databases, to define disease ... prevalence and care patterns among registrants, and to assess the value of the registry to stakeholders.

School-Based Health Centers and the Patient-Centered Medical Home. Position Statement

ERIC Educational Resources Information Center

National Assembly on School-Based Health Care, 2010

2010-01-01

The patient-centered medical home (PCMH) is an innovative care delivery model designed to provide comprehensive primary care services to people of all ages by fostering partnerships between patients, families, health care providers and the community. National Assembly on School-Based Health Care (NASBHC) recommends practices and policies that…

The design and conduct of a community-based registry and biorepository: a focus on cardiometabolic health in Latinos.