Sample records for nadya registry 1992-2007

  1. [Home Parenteral Nutrition (HPN) registry in Spain for the years 2007, 2008 and 2009 (NADYA-SENPE Group)].

    PubMed

    Puiggrós, C; Gómez-Candela, C; Chicharro, L; Cuerda, C; Virgili, N; Martínez, C; Moreno, J M; Pérez de la Cruz, A; Alvarez, J; Luengo, L M; Ordóñez, J; Wanden-Berghe, C; Cardona, D; Laborda, L; Garde, C; Pedrón, C; Gómez, L; Penacho, M A; Martínez-Olmos, M A; Apezetxea, A; Sánchez-Vilar, O; Cánovas, B; García, Y; Forga, M T; Gil, C

    2011-01-01

    To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the years 2007, 2008 and 2009. We compiled the data from the on-line registry introduced by the responsible Units for the monitoring of HPN from January 1st 2007 to December 31st 2009. Included fields were: age, sex, diagnosis and reason for HPN, access path, complications, beginning and end dates, complementary oral or enteral nutrition, activity level, autonomy degree, product and fungible material supply, withdrawal reason and intestinal transplant indication. 2007: 133 patients with HPN were registered (61 males and 72 females), belonging to 21 hospitals. Average age for the 119 patients older than 13 years old was 53.7 ± 14.9 years, and 3.6 ± 3.6 y. for the 14 patients under 14 years old. Most frequent pathology was neoplasm (24%), followed by intestinal motility disorders and actinic enteritis (14% both). The reason for HPN provision was short bowel syndrome (43%), malabsorption (27%), and intestinal obstruction (23%). Tunnelled catheters were mostly used (69%), followed by implanted port-catheters (27%). Catheter related infections were the most frequent complications, with a rate of 0.92 episodes/103 HPN days. HPN was provided for more than two years in 50% of the cases. By the end of 2007, 71.4% of the patients remained active; exitus was the most frequent reason to end HPN (57.5%). 26% of the patients were eligible for intestinal transplant. 2008: 143 patients with HPN were registered (62 males and 81 females), belonging to 24 hospitals. Average age for the 133 patients older than 13 years old was 54.7 ± 13.9 years, and 3.7 ± 0.6 y. for the 10 patients under 14 years old. Most frequent pathology was neoplasm (20%), followed by actinic enteritis (14%) and intestinal motility disorders (13% ). The reason for HPN provision was short bowel syndrome (44%), malabsorption (28%), and intestinal obstruction (20%). Tunnelled catheters were mostly used (60

  2. [Spanish Registry of Home-based Parenteral Nutrition during 2006 (NADYA-SENPE Group)].

    PubMed

    Puiggrós, C; Chicharro, M L; Gómez-Candela, C; Virgili, N; Cuerda, C; Gómez-Enterría, P; Ordóñez, J; Moreno, J M; Penacho, M A; Pérez de la Cruz, A; Alvarez, J; Luengo, L M; Irles, J A; Wanden-Berghe, C; de Luis, D; Rodríguez-Pozo, A; Garde, C; Pedrón, C; Gómez, L; Cànovas, B

    2008-01-01

    To report the data of the Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE working group for the year 2006. We compiled the data from the on-line registry introduced by the responsible Units for the monitoring of HPN from January 1st to December 31st 2006. 103 patients with HPN were registered (47 males and 56 females), belonging to 19 hospitals. Average age for the 91 patients older than 14 years old was 53.3 +/- 14.9 years old, and that for the 12 patients under 14 years old was 2 +/- 0 years old. Most frequent pathology was neoplasm (29%), followed by intestinal motility disorders (13%). The reason for HPN provision was short bowel syndrome (40%), intestinal obstruction (22%), and malabsorption (21%). Tunneled catheters were mostly used (45%), followed by implanted port-catheters (32%). Catheter related infections were the most frequent complications, with a rate of 0.85 episodes / 10(3) days. HPD was provided for more than two years in 50% of the cases. By the end of 2006, 70.9% of the patients remained active; exitus was the most frequent reason to end HPN (53%). Complementary oral or enteral nutrition was provided to 52% of the patients. 48% of the patients had a normal activity level, and a 55% were autonomous. PN formula was supplied by the hospital in 82% of the cases, while this number was 78% for fungible materials. 27% of the patients were eligible for intestinal transplant. We observe an increase in registered patients with respect to previous years, with a very different prevalence among regions. Neoplasia remains as the main pathology since 2003. We observe a decrease in catheter-related infections with respect to the 2004-2005 period.

  3. [The registry of home artificial nutrition and ambulatory of the Spanish Society of Parenteral and Enteral Nutrition; SWOT analysis].

    PubMed

    Wanden-Berghe, C; Pérez de la Cruz, A; Lobo Tamer, G; Calleja Fernández, A; Gómez Candela, C; Zugasti Murillo, A; Apezetxea Celaya, A; Torres Corts, A; Moreno Villarés, J M; de Luis, D; Penacho, Ma Á; Laborda, L; Burgos, R; Irles, J A; Cuerda Compes, C; Virgili Casas, Ma N; Martínez Olmos, M A; García Luna, P P

    2012-01-01

    To evidence by means of a SWOT-R analysis performed by an expert consensus the most worrying characteristics of the register on Home-based and Outpatient Artificial Nutrition. SWOT-R analysis with expert consensus. We requested the participation of the active members of the NADYA group within the last 5 years with the premise of structuring the SWOT-R based on the characteristics of the NADYA registry from its beginning. 18 experts from hospitals all over Spain have participated. The internal analysis seems to be positive, presenting the registry as having important resources. The external analysis did not show a great number of threats, there are very potent factors, "the voluntariness" of the registry and the "dependence on external financing". The opportunities identified are important. The recommendations are aimed at stabilizing the system by decreasing the threats as one of the main focus of the strategies to develop as well as promoting the items identified as opportunities and strengths. The analysis shows that the NADYA register shows a big potentiality for improvement. The proposed recommendations should be structured in order to stay on the track of development and quality improvement that has characterized the NADYA register from the beginning.

  4. A Home and Ambulatory Artificial Nutrition (NADYA) group report, Home Parenteral Nutrition in Spain, 2013.

    PubMed

    Wanden-Berghe, Carmina; Cuerda Compes, J Cristina; Burgos Peláez, Rosa; Gómez Candela, Carmen; Virgili Casas, Nuria; Pérez de la Cruz, Antonio; Moreno Villares, José Manuel; Carabaña Pérez, Fátima; Garde Orbaiz, Carmen; Martínez Faedo, Ceferino; Penacho Lázaro, Ma Ángeles; Gonzalo Marín, Montserrat; García Luna, Pedro Pablo; Matía Martín, Pilar; Sanz Paris, Alejandro; Luengo Pérez, Luis Miguel; Martín Folgueras, Tomás; García Zafra, María Victoria; Hernández, Álvarez; Campos Martín, Cristina; Suárez Llanos, José Pablo; Zugasti, Ana; Apezetxea Celaya, Antxón; Urgeles Planella, Juan Ramon; Laborda González, Lucía; Sánchez-Vilar Burdiel, Olga; Joaquín Ortiz, Clara; Martínez Costa, Cecilia; Vidal Casariego, Alfonso; Leyes García, Pere; Ponce González, Miguel Angel; Gil Martínez, Ma Carmen; Sánchez Martos, Eva Ángeles; del Olmo García, Ma Dolores; Díaz Guardiola, Patricia

    2015-06-01

    To communicate the results of the Spanish Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE group for the year 2013. Data was recorded online by NADYA group collaborators that were responsible of the HPN follow-up from 1st January to 31st December 2013. A total of 197 patients and 202 episodes of HPN were registered from 35 hospitals that represents a rate of 4,22 patients/million habitants/year 2013. The median age was 53 years (IQR 40-64) for 189 adult patients and 7 months (IQR 6-35,5) for children. The most frequent disease in adults was neoplasm (30,7%) followed by other diseases (20,1%) and mesenteric ischemia (12,7%). Short bowel syndrome and intestinal obstruction (25,9%) were in 35.7% cases the indications for HPN. The most frequent diagnosis for children were the congenital intestinal disorders and other diagnosis, both with a (37,5%) and short bowel syndrome and intestinal obstruction were the indication for treatment, each was present in 50% of the sample. Tunneled catheters (50%) and subcutaneous reservoirs (27,7%) were frequently used. The septic complications related with catheter were commonly frequent with a rate of 0.74 infections/1000 HPN days. HPN duration presented a median of 1,69 days. A total of 86 episodes finalized during the year, death was the principal reason (45%), followed by "resumed oral via" (43,75%) while it happened inversely for children, 66,7% of them resumed oral via and 16,7% deceased. Fifteen per cent were considered for intestinal transplant, children were proportionally candidates, p-value 0.002. The number of participating centers and registered patients increased progressively respect to preceding years. Since 2003 Neoplasm is still being the principal pathological group. Death is adult's principal reason for finalizing HPN and "resuming oral via" for children. Despite that NADYA registry is consolidate as a essential source of relevant information about the advances in Home Artificial Nutrition in our country

  5. Artificial Nutritional Support Registries: systematic review.

    PubMed

    Castelló-Botía, I; Wanden-Berghe, C; Sanz-Valero, J

    2009-01-01

    The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.

  6. Award for Distinguished Contributions to Education and Training in Psychology: Nadya A. Fouad

    ERIC Educational Resources Information Center

    American Psychologist, 2009

    2009-01-01

    Nadya A. Fouad, recipient of the Award for Distinguished Contributions to Education and Training in Psychology, is cited for her role in the development and implementation of the Multicultural Guidelines, her commitment to social justice and equality, and her pioneering work in establishing benchmarks for trainee competency. Her contributions to…

  7. DECOVALEX Project: from 1992 to 2007

    NASA Astrophysics Data System (ADS)

    Tsang, Chin-Fu; Stephansson, Ove; Jing, Lanru; Kautsky, Fritz

    2009-05-01

    The DECOVALEX project is a unique international research collaboration, initiated in 1992, for advancing the understanding and mathematical modelling of coupled thermo-hydro-mechanical (THM) and thermo-hydro-mechanical-chemical (THMC) processes in geological systems—subjects of importance for performance assessment of radioactive waste repositories in geological formations. From 1992 up to 2007, the project has made important progress and played a key role in the development of numerical modelling of coupled processes in fractured rocks and buffer/backfill materials. The project has been conducted by research teams supported by a large number of radioactive-waste-management organizations and regulatory authorities, including those of Canada, China, Finland, France, Japan, Germany, Spain, Sweden, UK, and the USA. Through this project, in-depth knowledge has been gained of coupled THM and THMC processes associated with nuclear waste repositories, as well as numerical simulation models for their quantitative analysis. The knowledge accumulated from this project, in the form of a large number of research reports and international journal and conference papers in the open literature, has been applied effectively in the implementation and review of national radioactive-waste-management programmes in the participating countries. This paper presents an overview of the project.

  8. Haemopoietic stem cell transplantation in Australia and New Zealand, 1992-2001: progress report from the Australasian Bone Marrow Transplant Recipient Registry.

    PubMed

    Nivison-Smith, I; Bradstock, K F; Dodds, A J; Hawkins, P A; Szer, J

    2005-01-01

    Bone marrow and blood stem cell transplantation is now used as curative therapy for a range of haematological malignancies and other conditions. The Australasian Bone Marrow Transplant Recipient Registry (ABMTRR) has recorded transplant activity in Australia since 1992; transplant centres in New Zealand have corresponded with the Registry since 1998. To describe allogeneic and autologous bone marrow and blood stem cell transplantation activity and outcomes in Australia and New Zealand from 1992 to 2001. Each haemopoietic stem cell transplant centre in Australia and New Zealand contributes information to the Registry via a single information form compiled when a transplant is performed. An annual follow-up request is then sent from the Registry to the contributing centre at the anniversary of each individual transplant. Haemopoietic stem cell transplants in Australia have increased in number from 478 in 1992 to 937 in 2001, whereas in New Zealand the number has grown from 91 in 1998 to 105 in 2001, mainly as a result of an increase in autologous blood stem cell transplants. The number of hospitals contributing to the ABMTRR has grown from 20 in 1992 to 37 in 2001. The most common indication for autologous transplantation in 2001 was non-Hodgkin's lymphoma, whereas for allogeneic transplants it was acute myeloid leukaemia. The 9-year actuarial disease-free survival probability for patients aged 16 and above between 1992 and 2000 was 37% for autologous, 39% for allogeneic related donor and 30% for allogeneic unrelated donor transplants. Recurrence of the underlying disease was the main cause of death post-transplant after both allogeneic (26.3% of deaths in the first year and 68.0% of deaths in the second year) and autologous transplants (59.0% and 86.2%). Treatment-related mortality was 16.9% after allogeneic transplantation and 2.1% after autologous transplantation in 2000. The ABMTRR provides a comprehensive source of information on the use of bone marrow

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

    PubMed

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

    2006-01-01

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

  10. [Epidemiological trends 1992-2007 in a neonatal intensive care unit].

    PubMed

    Feria-Kaiser, Carina; Vargas, Mario H; Furuya, María E Y

    2013-01-01

    progressive advances in neonatal care are expected to change the epidemiological profile of patients and conditions seen in neonatal intensive care units (NICU). Thus, the objective of this study was to identify such changes in a NICU in Mexico City. retrospectively, we analyzed age, gender, weight at admission, hospital stay,diagnoses at discharge and cause of death in 5,192 patients admitted from 1992-2007. in the study period,patients were admitted at a progressively older age (median of 3 days old in 1992 to 9 in 2007; rS = 0.87) and lower weight (2,800-2,343 g; rS = –0.56), while length of hospital stay was stable (approximately, 9 days). Over 90% patients had cardiological, digestive and/or pulmonary diseases, and most patients (71.4%) had conditions for which a surgical approach is the usual treatment. Cardiological and neurologic problems increased (rS = 0.86 and 0.85, respectively),while pulmonary diseases decreased (rS = –0.79). Mortality and autopsy rate diminished from 26 to 15% (rS = –0.80),and from 32.5 to 10.7% (rS = –0.53), respectively. Conditions more frequently associated with death were urologic/nephrologic and infectious diseases. epidemiological patterns in our NICU are clearly changing, and thus searching for similar time trends in other NICU is warranted.

  11. United States transuranium and uranium registries - 25 years of growth, research, and service. Annual report, April 1992--September 1993

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

    Kathren, R.L.; Harwick, L.A.; Toohey, R.E.

    The Registries originated in 1968 as the National Plutonium Registry with the name changed to the United States Transuranium Registry the following year to reflect a broader concern with the heavier actinides as well. Initially, the scientific effort of the USTR was directed towards study of the distribution and dose of plutonium and americium in occupationally exposed persons, and to assessment of the effects of exposure to the transuranium elements on health. This latter role was reassessed during the 1970`s when it was recognized that the biased cohort of the USTR was inappropriate for epidemiologic analysis. In 1978, the administrativelymore » separate but parallel United States Uranium Registry was created to carry out similar work among persons exposed to uranium and its decay products. A seven member scientific advisory committee provided guidance and scientific oversight. In 1992, the two Registries were administratively combined and transferred from the purview of a Department of Energy contractor to Washington State University under the provisions of a grant. Scientific results for the first twenty-five years of the Registries are summarized, including the 1985 publication of the analysis of the first whole body donor. Current scientific work in progress is summarized along with administrative activities for the period.« less

  12. 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

  13. 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

  14. [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.

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

    PubMed

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

    2009-11-06

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

  16. Dump truck-related deaths in construction, 1992-2007.

    PubMed

    McCann, Michael; Cheng, Mei-Tai

    2012-05-01

    Dump trucks are universally used in construction and other industries to haul materials to the location and to remove waste materials. The source for dump truck-related fatality data was the Bureau of Labor Statistics Census of Fatal Occupational Injuries (CFOI) Research File. From 1992 to 2007, 829 construction workers were killed in dump truck-related incidents nationwide. Of those, 336 were dump truck operators with 215 deaths occurring in street and highway incidents. Another 343 deaths involved workers on foot, three-quarters struck by dump trucks. Sixty-four of the construction workers killed were maintaining dump trucks, 22 when caught between the truck frame and a falling dump truck bed. Of the 86 other deaths, 55 involved streets and highways. Recommendations include: (i) improving the reporting of seat belt usage in fatality reports; (ii) requiring use of seat belts; (iii) requiring the use of backup alarms, spotters, or other methods to alert dump truck operators to workers in their blind spots; (iv) prohibiting direct dumping at river banks and embankments; (v) using cameras or radar to enforce stopping at railway crossings; and (xi) enforcing worker safety practices (e.g., lockout/tagout procedures on elevated dump truck beds). Copyright © 2011 Wiley Periodicals, Inc.

  17. 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.

  18. US Higher Education in a Budgetary Vortex--1992-2007: Tracing the Positioning of Academe in the Context of Growing Inequality

    ERIC Educational Resources Information Center

    de Oliver, Miguel; Briscoe, Felecia M.

    2011-01-01

    Through comparative statistical data of public investment trends in higher education, the institution of higher education in the US is contemporarily contextualized within the growing milieu of disparity. Specifically, this study focuses on the period from 1992 to 2007 to see if a mitigation of the growing economic disparity projected per the…

  19. Differing trends in the association between obesity and self-reported health in Portugal and Switzerland. Data from national health surveys 1992-2007.

    PubMed

    Marques-Vidal, Pedro; Ravasco, Paula; Paccaud, Fred

    2012-08-01

    The escalating prevalence of obesity might prompt obese subjects to consider themselves as normal, as this condition is gradually becoming as frequent as normal weight. In this study, we aimed to assess the trends in the associations between obesity and self-rated health in two countries. Data from the Portuguese (years 1995-6, 1998-6 and 2005-6) and Swiss (1992-3, 1997, 2002 and 2007) National Health Surveys were used, corresponding to more than 130,000 adults (64,793 for Portugal and 65,829 for Switzerland). Body mass index and self-rated health were derived from self-reported data. Obesity levels were higher in Portugal (17.5% in 2005-6 vs. 8.9% in 2007 in Switzerland, p < 0.001) and increased in both countries. The prevalence of participants rating their health as "bad" or "very bad" was higher in Portugal than in Switzerland (21.8% in 2005-6 vs 3.9% in 2007, p < 0.001). In both countries, obese participants rated more frequently their health as "bad" or "very bad" than participants with regular weight. In Switzerland, the prevalence of "bad" or "very bad" rates among obese participants, increased from 6.5% in 1992-3 to 9.8% in 2007, while in Portugal it decreased from 41.3% to 32.3%. After multivariate adjustment, the odds ratio (OR) of stating one self's health as "bad" or "very bad" among obese relative to normal weight participants, almost doubled in Switzerland: from 1.38 (95% confidence interval, CI: 1.01-1.87) in 1992-3 to 2.64 (95% CI: 2.14-3.26) in 2007, and similar findings were obtained after sample weighting. Conversely, no such trend was found in Portugal: 1.35 (95% CI: 1.23-1.48) in 1995-6 and 1.52 (95% CI: 1.37-1.70) in 2005-6. Obesity is increasing in Switzerland and Portugal. Obesity is increasingly associated with poorer self-health ratings in Switzerland but not in Portugal.

  20. From unemployment to disability? Relationship between unemployment rate and new disability pensions in Iceland 1992-2007.

    PubMed

    Thorlacius, Sigurður; Ólafsson, Stefán

    2012-02-01

    The study was carried out in order to examine the effect of unemployment on the incidence of disability pension in Iceland by examining changes in this relationship from 1992 to 2007. The annual incidence of disability pension for the period 1992-2007 was calculated. Correlations and significance tests for the relationship between unemployment rates and disability pension incidence rates were calculated. The relationship was examined for different disease groups. Two big fluctuations occurred in the unemployment rate during the study period with an upswing in unemployment from 1993 to 1995 and in 2002 and 2003. In both cases, there were corresponding increases in the incidence of disability pension. The incidence of disability pension declined again when the level of unemployment went down, even though not to the same extent. Health and mental and physical capability determine the overall incidence of disability pension, but marginal fluctuations over time seem to be related to environmental conditions in the labour market, especially the unemployment rate. The observed disability pension incidence pattern in the two unemployment cycles of the study period indicates mainly that people with impaired health are forced out of the labour market in times of increasing unemployment rather than pointing towards a negative effect of unemployment on health. Our findings indicate that there is a need to strengthen the vocational rehabilitation system in Iceland as well as the support system for employment and social participation.

  1. Demographic variation in incidence of adult glioma by subtype, United States, 1992-2007.

    PubMed

    Dubrow, Robert; Darefsky, Amy S

    2011-07-29

    We hypothesized that race/ethnic group, sex, age, and/or calendar period variation in adult glioma incidence differs between the two broad subtypes of glioblastoma (GBM) and non-GBM. Primary GBM, which constitute 90-95% of GBM, differ from non-GBM with respect to a number of molecular characteristics, providing a molecular rationale for these two broad glioma subtypes. We utilized data from the Surveillance, Epidemiology, and End Results Program for 1992-2007, ages 30-69 years. We compared 15,088 GBM cases with 9,252 non-GBM cases. We used Poisson regression to calculate adjusted rate ratios and 95% confidence intervals. The GBM incidence rate increased proportionally with the 4th power of age, whereas the non-GBM rate increased proportionally with the square root of age. For each subtype, compared to non-Hispanic Whites, the incidence rate among Blacks, Asians/Pacific Islanders, and American Indians/Alaskan Natives was substantially lower (one-fourth to one-half for GBM; about two-fifths for non-GBM). Secondary to this primary effect, race/ethnic group variation in incidence was significantly less for non-GBM than for GBM. For each subtype, the incidence rate was higher for males than for females, with the male/female rate ratio being significantly higher for GBM (1.6) than for non-GBM (1.4). We observed significant calendar period trends of increasing incidence for GBM and decreasing incidence for non-GBM. For the two subtypes combined, we observed a 3% decrease in incidence between 1992-1995 and 2004-2007. The substantial difference in age effect between GBM and non-GBM suggests a fundamental difference in the genesis of primary GBM (the driver of GBM incidence) versus non-GBM. However, the commonalities between GBM and non-GBM with respect to race/ethnic group and sex variation, more notable than the somewhat subtle, albeit statistically significant, differences, suggest that within the context of a fundamental difference, some aspects of the complex process of

  2. Differing trends in the association between obesity and self-reported health in Portugal and Switzerland. Data from national health surveys 19922007

    PubMed Central

    2012-01-01

    Background The escalating prevalence of obesity might prompt obese subjects to consider themselves as normal, as this condition is gradually becoming as frequent as normal weight. In this study, we aimed to assess the trends in the associations between obesity and self-rated health in two countries. Methods Data from the Portuguese (years 1995–6, 1998–6 and 2005–6) and Swiss (1992–3, 1997, 2002 and 2007) National Health Surveys were used, corresponding to more than 130,000 adults (64,793 for Portugal and 65,829 for Switzerland). Body mass index and self-rated health were derived from self-reported data. Results Obesity levels were higher in Portugal (17.5% in 2005–6 vs. 8.9% in 2007 in Switzerland, p < 0.001) and increased in both countries. The prevalence of participants rating their health as “bad” or “very bad” was higher in Portugal than in Switzerland (21.8% in 2005–6 vs 3.9% in 2007, p < 0.001). In both countries, obese participants rated more frequently their health as “bad” or “very bad” than participants with regular weight. In Switzerland, the prevalence of “bad” or “very bad” rates among obese participants, increased from 6.5% in 1992–3 to 9.8% in 2007, while in Portugal it decreased from 41.3% to 32.3%. After multivariate adjustment, the odds ratio (OR) of stating one self’s health as “bad” or “very bad” among obese relative to normal weight participants, almost doubled in Switzerland: from 1.38 (95% confidence interval, CI: 1.01–1.87) in 1992–3 to 2.64 (95% CI: 2.14–3.26) in 2007, and similar findings were obtained after sample weighting. Conversely, no such trend was found in Portugal: 1.35 (95% CI: 1.23–1.48) in 1995–6 and 1.52 (95% CI: 1.37–1.70) in 2005–6. Conclusion Obesity is increasing in Switzerland and Portugal. Obesity is increasingly associated with poorer self-health ratings in Switzerland but not in Portugal. PMID:22852585

  3. Trends and educational differences in non-communicable disease risk factors in Pitkäranta, Russia, from 1992 to 2007.

    PubMed

    Vlasoff, Tiina; Laatikainen, Tiina; Korpelainen, Vesa; Uhanov, Mihail; Pokusajeva, Svetlana; Tossavainen, Kerttu; Vartiainen, Erkki; Puska, Pekka

    2015-02-01

    Mortality and morbidity from non-communicable diseases (NCDs) is a major public health problem in Russia. The aim of the study was to examine trends and educational differences from 1992 to 2007 in NCD risk factors in Pitkäranta in the Republic of Karelia, Russia. Four cross-sectional population health surveys were carried out in the Pitkäranta region, Republic of Karelia, Russia, in 1992, 1997, 2002, and 2007. An independent random sample of 1000 persons from the general population aged 25-64 years was studied in each survey round. The total number of respondents in the four surveys was 2672. The surveys included a questionnaire, physical measurements, and blood sampling, and they were carried out following standard protocols. The NCD risk factor trends generally increased in Pitkäranta during the study period with the exception of systolic blood pressure and smoking among men. Especially significant increases were observed in alcohol consumption among both sexes and in smoking among women. Educational differences and differences in trends were relatively small with the exception of a significant increase in smoking in the lowest female educational category. Trends showing an increase in some major NCD risk factors and signs of emerging socio-economic differences call for stronger attention to effective health promotion and preventive policies in Russia. © 2014 the Nordic Societies of Public Health.

  4. Embodied energy use in China's infrastructure investment from 1992 to 2007: calculation and policy implications.

    PubMed

    Liu, Hongtao; Xi, Youmin; Ren, Bingqun; Zhou, Heng

    2012-01-01

    Infrastructure has become an important topic in a variety of areas of the policy debate, including energy saving and climate change. In this paper, we use an energy input-output model to evaluate the amounts of China's embodied energy use in infrastructure investment from 1992 to 2007. We also use the structure decomposition model to analyze the factors impacting the embodied energy use in infrastructure investment for the same time period. The results show that embodied energy use in infrastructure investment accounted for a significant proportion of China's total energy use with an increasing trend and reflect that improper infrastructure investment represents inefficient use of energy and other resources. Some quantitative information is provided for further determining the low carbon development potentials of China's economy.

  5. Embodied Energy Use in China's Infrastructure Investment from 1992 to 2007: Calculation and Policy Implications

    PubMed Central

    Liu, Hongtao; Xi, Youmin; Ren, Bingqun; Zhou, Heng

    2012-01-01

    Infrastructure has become an important topic in a variety of areas of the policy debate, including energy saving and climate change. In this paper, we use an energy input-output model to evaluate the amounts of China's embodied energy use in infrastructure investment from 1992 to 2007. We also use the structure decomposition model to analyze the factors impacting the embodied energy use in infrastructure investment for the same time period. The results show that embodied energy use in infrastructure investment accounted for a significant proportion of China's total energy use with an increasing trend and reflect that improper infrastructure investment represents inefficient use of energy and other resources. Some quantitative information is provided for further determining the low carbon development potentials of China's economy. PMID:23365534

  6. Evidence of prostate cancer "reverse stage migration" toward more advanced disease at diagnosis: Data from the Pennsylvania Cancer Registry.

    PubMed

    Reese, Adam C; Wessel, Sean R; Fisher, Susan G; Mydlo, Jack H

    2016-08-01

    The widespread adoption of prostate-specific antigen-based prostate cancer screening caused a stage migration toward earlier stage disease at diagnosis. We investigated whether this stage migration has persisted in a contemporary analysis of a population-based statewide cancer registry. We analyzed the Pennsylvania Cancer Registry, a statewide registry of all newly diagnosed cancers. Data were collected on prostate cancers diagnosed between 1992 and 2012. We determined age-adjusted prostate cancer incidence and mortality rates, as well as the distribution of tumor stage (localized, regional, or metastatic) at diagnosis, and assessed for changes in these variables over time using joinpoint analysis. Between 1992 and 2012, 210,831 new cases of prostate cancer were diagnosed in Pennsylvania, and 33,948 men died of disease. Age-adjusted prostate cancer incidence rates, and specifically the incidence of localized disease, have decreased dramatically since 2007 to 2008. Due to the decreased diagnosis of localized disease, regional and metastatic tumors have made up a greater percentage of all prostate cancer diagnoses in recent years, despite a relatively stable incidence of these advanced stage tumors. Over the past 2 decades, age-adjusted prostate cancer incidence rates in Pennsylvania have decreased, primarily because of the decreased detection of early-stage disease. There has been a corresponding shift toward more advanced disease at diagnosis. These findings may be explained by the decreased use of prostate-specific antigen-based screening, among other factors. The 2012 United States Preventative Services Task Force recommendations against prostate cancer screening may exacerbate this concerning trend, potentially resulting in an increase in prostate cancer-specific mortality. Copyright © 2016 Elsevier Inc. All rights reserved.

  7. Toxic substances registry system: Index of material safety data sheets

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Jul. 1992 Revision of the KSC Toxic Substances Registry System (TSRS) Index of Material Safety Data Sheets (MSDS's) is presented. The listed MSDS's reflect product inventories and associated MSDS's which were submitted to the Toxic Substance Registry Data Base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

  8. Do racial inequities in infant mortality correspond to variations in societal conditions? A study of state-level income inequality in the U.S., 1992-2007.

    PubMed

    Siddiqi, Arjumand; Jones, Marcella K; Bruce, Donald J; Erwin, Paul C

    2016-09-01

    Prior studies have examined the association between income inequality and overall infant mortality rates (IMR). We examine effects of income inequality on racial inequities in IMR over the period 1992-2007 in the U.S. Race-specific state IMR data were obtained from 1992 to 2007, from which absolute and relative IMR inequities were calculated. Fixed and random effects models, adjusted for state-level median income, percent poverty, percent high school graduates, and unemployment rate, were used to determine contemporaneous and lagged state-level associations between income inequality and racial IMR inequities. Racial IMR inequities varied significantly across the U.S. Contemporaneous income inequality was negatively associated with white IMR only. Two-year lagged income inequality was negatively associated with black IMR and had the most pronounced effect on racial inequities in IMR. Future studies should consider lagged effects of income inequality on IMR and other health outcomes, and should examine other potential societal conditions that may account for state-level variations in racial IMR inequities. Copyright © 2016 Elsevier Ltd. All rights reserved.

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

    PubMed Central

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

    2015-01-01

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

  10. Variability of the Antarctic Surface Water and the Upper Circumpolar Deep Water from 1992 WOCE and 2007-2008 Argo data along the section P19 in Southeastern Pacific

    NASA Astrophysics Data System (ADS)

    Kang, S.; Lee, J.; Kim, Y.; Kim, E.; Seung, Y.

    2013-12-01

    The variability of the Upper Circumpolar Deep Water (UCDW) and Antarctic Surface Water (AASW) is examined based upon the World Ocean Circulation Experiment (WOCE) data in 1992 and Argo data in 2007 and 2008 along the section P19. D.G. Martinson (2012) examined the Antarctic Circumpolar Current's role in the Antarctic Ice System and showed that 3-color WOCE temperature sections, including section P19, showed that tilt of the isopycnals associated with ACC prevent warm tropical waters from reaching Antarctic continental margin. The paper also described that warm UCDW layer slips along the tilted isopycnals to reach the continental slope in section P19 along the Western Antarctic Peninsula (WAP). It is also revealed that the UCDW, associated with the ACC in section P19, occupies the domain from 58°S to 68°S with meridional ACC width of about 1,000km. In order to estimate the fluctuation of the warm UCDW layer the Argo data both in 2007 and 2008 were collected and the location of the warm UCDW from Argo data in 2007 and 2008 was compared with that of WOCE from Martinson (2012) in 1992. The argo data in 2007 and 2008 are used to examine the tilted isopycnal pattern of the warm UCDW represented by warm waters above 1.8°C. One thing to note is that the southern limit of the UCDW in the WOCE data in 1992, appears to move northward in Argo data of 2007 and 2008. Also AASW less than 2.0°C from the WAP in Argo data replaces the rather warm thin layer between 62°S nearly to 69°S shown in the WOCE data in 1992. The low salinity layer bounded by 34.0 psu extends far north compared with that of WOCE data, indicating that the ice melting water from the WAP flows northward. Since all year round data in case of Argo data are used and the error by the seasonal fluctuation may be introduced in the location of the upper 500m depth. The global wind stress curl data by SCOW (Scatterometer Climatology of Ocean Wind) are available over 1997 to 2007, which reveals that the wind stress

  11. New College Graduates at Work: Employment among 1992-93, 1999-2000, and 2007-08 Bachelor's Degree Recipients 1 Year after Graduation. Stats in Brief. NCES 2014-003

    ERIC Educational Resources Information Center

    Staklis, Sandra; Skomsvold, Paul

    2014-01-01

    This Statistics in Brief examines the employment outcomes of college graduates 1 year after earning a bachelor's degree. It compares 2007-08 bachelor's degree recipients who graduated at the start of the recent recession with their peers who graduated in 1992-93 and 1999-2000. Different labor market conditions characterized these three time…

  12. Method for Estimating Annual Atrazine Use for Counties in the Conterminous United States, 1992-2007

    USGS Publications Warehouse

    Thelin, Gail P.; Stone, Wesley W.

    2010-01-01

    A method was developed to estimate annual atrazine use during 1992 to 2007 on sixteen crops and four agricultural land uses. For each year, atrazine use was estimated for all counties in the conterminous United States (except California) by combining (1) proprietary data from the Doane Marketing Research-Kynetec (DMRK) AgroTrak database on the mass of atrazine applied to agricultural crops, (2) county harvested crop acreage, by county, from the 1992, 1997, 2002, and 2007 Censuses of Agriculture, and (3) annual harvested crop acreage from National Agriculture Statistics Service (NASS) for non-Census years. DMRK estimates of pesticide use on individual crops were derived from surveys of major field crops and selected specialty crops in multicounty areas referred to as Crop Reporting Districts (CRD). The CRD-level atrazine-use estimates were disaggregated to obtain county-level application rates by dividing the mass (pounds) of pesticides applied to a crop by the acreage of that crop in the CRD to yield a rate per harvested acre. When atrazine-use estimates were not available for a CRD, crop, or year, an estimated rate was developed following a hierarchy of decision rules that checked first for the availability of a crop application rate from surveyed atrazine application rate(s) for adjacent CRDs for a specific year, and second, the rates from surveyed CRDs within for U.S. Department of Agriculture Farm Production Regions for a specific year or multiple years. The estimation method applied linear interpolation to estimate crop acreage for years when harvested acres for a crop and county were not reported in either the Census of Agriculture or the NASS database, but were reported by these data sources for other years for that crop and county. Data for atrazine use for the counties in California was obtained from farmers' reports of pesticide use collected and published by the California Department of Pesticide Regulation-Pesticide Use Reporting (DPR-PUR) because these

  13. Smoking restrictions in bars and bartender smoking in the US, 1992-2007.

    PubMed

    Bitler, Marianne P; Carpenter, Christopher; Zavodny, Madeline

    2011-05-01

    The present work is an analysis of whether adoption of state clean indoor air laws (SCIALs) covering bars reduces the proportion of bartenders who smoke primarily by reducing smoking among people already employed as bartenders when restrictions are adopted or by changing the composition of the bartender workforce with respect to smoking behaviours. Logistic regressions were estimated for a variety of smoking outcomes, controlling for individual demographic characteristics, state economic characteristics, and state, year, and month fixed effects, using data on 1380 bartenders from the 1992-2007 Tobacco Use Supplement to the Current Population Survey combined with data on SCIALs from ImpacTeen. State restrictions on smoking in bars are negatively associated with whether a bartender smokes, with a 1-point increase in restrictiveness (on a scale of 0-3) associated with a 5.3% reduction in the odds of smoking. Bar SCIALs are positively associated with the likelihood a bartender reports never having smoked cigarettes but not with the likelihood a bartender reports having been a former smoker. State clean indoor air laws covering bars appear to reduce smoking among bartenders primarily by changing the composition of the bartender workforce with respect to smoking rather than by reducing smoking among people already employed as bartenders when restrictions are adopted. Such laws may nonetheless be an important public health tool for reducing secondhand smoke.

  14. Sex differences in lung cancer survival: long-term trends using population-based cancer registry data in Osaka, Japan.

    PubMed

    Kinoshita, Fukuaki Lee; Ito, Yuri; Morishima, Toshitaka; Miyashiro, Isao; Nakayama, Tomio

    2017-09-01

    Several studies of sex differences in lung cancer survival have been reported. However, large-size population-based studies based on long-term observation are scarce. We investigated long-term trends in sex differences in lung cancer survival using population-based cancer registry data from Osaka, Japan. We analyzed 79 330 cases from the Osaka Cancer Registry (OCR) diagnosed between 1975 and 2007. We calculated 5-year relative survival in the six periods (1975-1980, 1981-1986, 1987-1992, 1993-1997, 1998-2002 and 2003-2007). To estimate the trends in sex differences in lung cancer survival throughout the study period, we applied a multivariate excess hazard model to control for confounders. The proportion of adenocarcinoma (ADC) and 5-year relative relative survival have increased for both sexes. Sex differences in lung cancer survival have widened over the period, especially in ADC and since the late 1990s. The excess hazard ratio of death within 5 years for males was 1.19 (95% CI: 1.16-1.21), adjusting for period at diagnosis, histologic type, stage, age group and treatment. We reported that females have better prognosis in lung cancer than males and the sex differences in lung cancer survival have become wider in Osaka, Japan. This can be partly explained by the sex differences in the proportions of histologic type and stage. Further studies considering other factors that influence sex differences in lung cancer survival are needed. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

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

    PubMed

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

    1999-01-01

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

  16. Annual report to the nation on the status of cancer, 1975-2007, featuring tumors of the brain and other nervous system.

    PubMed

    Kohler, Betsy A; Ward, Elizabeth; McCarthy, Bridget J; Schymura, Maria J; Ries, Lynn A G; Eheman, Christie; Jemal, Ahmedin; Anderson, Robert N; Ajani, Umed A; Edwards, Brenda K

    2011-05-04

    The American Cancer Society, the Centers for Disease Control and Prevention (CDC), the National Cancer Institute, and the North American Association of Central Cancer Registries (NAACCR) collaborate annually to provide updated information on cancer occurrence and trends in the United States. This year's report highlights brain and other nervous system (ONS) tumors, including nonmalignant brain tumors, which became reportable on a national level in 2004. Cancer incidence data were obtained from the National Cancer Institute, CDC, and NAACCR, and information on deaths was obtained from the CDC's National Center for Health Statistics. The annual percentage changes in age-standardized incidence and death rates (2000 US population standard) for all cancers combined and for the top 15 cancers for men and for women were estimated by joinpoint analysis of long-term (1992-2007 for incidence; 1975-2007 for mortality) trends and short-term fixed interval (1998-2007) trends. Analyses of malignant neuroepithelial brain and ONS tumors were based on data from 1980-2007; data on nonmalignant tumors were available for 2004-2007. All statistical tests were two-sided. Overall cancer incidence rates decreased by approximately 1% per year; the decrease was statistically significant (P < .05) in women, but not in men, because of a recent increase in prostate cancer incidence. The death rates continued to decrease for both sexes. Childhood cancer incidence rates continued to increase, whereas death rates continued to decrease. Lung cancer death rates decreased in women for the first time during 2003-2007, more than a decade after decreasing in men. During 2004-2007, more than 213 500 primary brain and ONS tumors were diagnosed, and 35.8% were malignant. From 1987-2007, the incidence of neuroepithelial malignant brain and ONS tumors decreased by 0.4% per year in men and women combined. The decrease in cancer incidence and mortality reflects progress in cancer prevention, early detection

  17. Modeling interannual dense shelf water export in the region of the Mertz Glacier Tongue (1992-2007)

    NASA Astrophysics Data System (ADS)

    Cougnon, E. A.; Galton-Fenzi, B. K.; Meijers, A. J. S.; Legrésy, B.

    2013-10-01

    Ocean observations around the Australian-Antarctic basin show the importance of coastal latent heat polynyas near the Mertz Glacier Tongue (MGT) to the formation of Dense Shelf Water (DSW) and associated Antarctic Bottom Water (AABW). Here, we use a regional ocean/ice shelf model to investigate the interannual variability of the export of DSW from the Adélie (west of the MGT) and the Mertz (east of the MGT) depressions from 1992 to 2007. The variability in the model is driven by changes in observed surface heat and salt fluxes. The model simulates an annual mean export of DSW through the Adélie sill of about 0.07 ± 0.06 Sv. From 1992 to 1998, the export of DSW through the Adélie (Mertz) sills peaked at 0.14 Sv (0.29 Sv) during July to November. During periods of mean to strong polynya activity (defined by the surface ocean heat loss), DSW formed in the Adélie depression can spread into the Mertz depression via the cavity under the MGT. An additional simulation, where ocean/ice shelf thermodynamics have been disabled, highlights the fact that models without ocean/ice shelf interaction processes will significantly overestimate rates of DSW export. The melt rates of the MGT are 1.2 ± 0.4 m yr-1 during periods of average to strong polynya activity and can increase to 3.8 ± 1.5 m/yr during periods of sustained weak polynya activity, due to the increased presence of relatively warmer water interacting with the base of the ice shelf. The increased melting of the MGT during a weak polynya state can cause further freshening of the DSW and ultimately limits the production of AABW.

  18. Increasing rates of self-harm among children, adolescents and young adults: a 10-year national registry study 2007-2016.

    PubMed

    Griffin, Eve; McMahon, Elaine; McNicholas, Fiona; Corcoran, Paul; Perry, Ivan J; Arensman, Ella

    2018-05-02

    Rates of hospital-treated self-harm are highest among young people. The current study examined trends in rates of self-harm among young people in Ireland over a 10-year period, as well as trends in self-harm methods. Data from the National Self-Harm Registry Ireland on presentations to hospital emergency departments (EDs) following self-harm by those aged 10-24 years during the period 2007-2016 were included. We calculated annual self-harm rates per 100,000 by age, gender and method of self-harm. Poisson regression models were used to examine trends in rates of self-harm. The average person-based rate of self-harm among 10-24-year-olds was 318 per 100,000. Peak rates were observed among 15-19-year-old females (564 per 100,000) and 20-24-year-old males (448 per 100,000). Between 2007 and 2016, rates of self-harm increased by 22%, with increases most pronounced for females and those aged 10-14 years. There were marked increases in specific methods of self-harm, including those associated with high lethality. The findings indicate that the age of onset of self-harm is decreasing. Increasing rates of self-harm, along with increases in highly lethal methods, indicate that targeted interventions in key transition stages for young people are warranted.

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

    PubMed

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

    2012-11-01

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

  20. An ecological study of cancer incidence in Port Hope, Ontario from 1992 to 2007.

    PubMed

    Chen, Jing; Moir, Deborah; Lane, Rachel; Thompson, Patsy

    2013-03-01

    A plant processing radium and uranium ores has been operating in the town of Port Hope since 1932. Given the nuclear industry located in the community and ongoing public health concerns, cancer incidence rates in Port Hope were studied for a recent 16 year period (1992-2007) for continued periodic cancer incidence surveillance of the community. The cancer incidence in the local community for all cancers combined was similar to the Ontario population, health regions with similar socio-economic characteristics in Ontario and in Canada, and the Canadian population. No statistically significant differences in childhood cancer, leukaemia or other radiosensitive cancer incidence were observed, with the exception of statistically significant elevated lung cancer incidence among women. However, the statistical significance was reduced or disappeared when the comparison was made to populations with similar socio-economic characteristics. These findings are consistent with previous ecological, case-control and cohort studies conducted in Port Hope, environmental assessments, and epidemiological studies conducted elsewhere on populations living around similar facilities or exposed to similar environmental contaminants. Although the current study covered an extended period of time, the power to detect risk at the sub-regional level of analysis was limited since the Port Hope population is small (16,500). The study nevertheless indicated that large differences in cancer incidence are not occurring in Port Hope compared to other similar communities and the general population.

  1. Vegetation dynamics at a Mojave Desert restoration site, 1992 to 2007

    Treesearch

    Jeffrey E. Ott; E. Durant McArthur; Stewart C. Sanderson

    2011-01-01

    The Twist Hollow restoration site on BLM land near St. George, Utah, had been badly disturbed by sand mining, rock quarrying, dumping, off-road vehicles and target shooting prior to its closure and treatment. In December 1992 the site was sculpted and drill seeded with Indian ricegrass (Stipa hymenoides), sand dropseed (Sporobolus cryptandrus), galleta (Hilaria jamesii...

  2. National Suicide Registry Malaysia (NSRM).

    PubMed

    Hayati, A N; Kamarul, A K

    2008-09-01

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

  3. [Transversal study on the prevalence of Metabolic Bone Disease (MBD) and Home Parenteral Nutrition (HPN) in Spain: data from NADYA group].

    PubMed

    Martínez, C; Virgili, N; Cuerda, C; Chicharro, L; Gómez, P; Moreno, J M; Álvarez, J; Martí, E; Matía, P; Penacho, M A; Garde, C; De Luis, D; Gonzalo, M; Lobo, G

    2010-01-01

    Patients with intestinal failure who receive HPN are at high risk of developing MBD. The origin of this bone alteration is multifactorial and depends greatly on the underlying disease for which the nutritional support is required. Data on the prevalence of this disease in our environment is lacking, so NADYA-SEMPE group has sponsored this transversal study with the aim of knowing the actual MBD prevalence. Retrospective data from 51 patients from 13 hospitals were collected. The questionnaire included demographic data as well as the most clinically relevant for MBD data. Laboratory data (calciuria, PTH, 25 -OH -vitamin D) and the results from the first and last bone densitometry were also registered. Bone mineral density had only been assessed by densitometry in 21 patients at the moment HPN was started. Bone quality is already altered before HPN in a significant percentage of cases (52%). After a mean follow up of 6 years, this percentage increases up to 81%. Due to retrospective nature of the study and the low number of subjects included it has not been possible to determine the role that HPN plays in MBD etiology. Only 35% of patients have vitamin D levels above the recommended limits and the majority of them is not on specific supplementation. HPN is associated with very high risk of MBD, therefore, management protocols that can lead to early detection of the problem as well as guiding for follow up and treatment of these patients are needed.

  4. Intentional Drug Overdose Involving Pregabalin and Gabapentin: Findings from the National Self-Harm Registry Ireland, 2007-2015.

    PubMed

    Daly, Caroline; Griffin, Eve; Ashcroft, Darren M; Webb, Roger T; Perry, Ivan J; Arensman, Ella

    2018-04-01

    Intentional drug overdose (IDO) is a significant public health problem. Concerns about the misuse of gabapentinoids, i.e. pregabalin and gabapentin, including their consumption in IDO have grown in recent years. This paper examines the trends in the prevalence of gabapentinoids taken in IDO, the profile of individuals taking them, and associated overdose characteristics. Presentations to emergency departments involving IDO, recorded by the National Self-Harm Registry Ireland between 1 January 2007 and 31 December 2015 were examined. Data items included patient demographics, drug names, total tablet quantity consumed and alcohol involvement. Gabapentinoids were involved in 2115 (2.9%) of the 72,391 IDOs recorded. Presentations involving a gabapentinoid increased proportionally from 0.5% in 2007 to 5.5% in 2015. The majority of IDOs involving a gabapentinoid were made by females (59.9%), with over one-third (37.2%) involving alcohol. Compared with IDOs involving other drugs, presentations with a gabapentinoid were made by persons who were older (median 37 vs. 32 years) and involved a significantly greater median quantity of tablets (30 vs. 21, p ≤ 0.001), with over one-quarter (27.4%) of these involving the ingestion of 50 tablets or more. Admission to hospital was significantly more common following IDOs with a gabapentinoid compared with those without (49.4% vs. 41.4%, p ≤ 0.001). This study identified the increasing use of gabapentinoids in IDO, describing the profile and overdose characteristics of presentations. It is important for clinicians to exercise vigilance while prescribing gabapentinoids, including being aware of other medications that their patients may have access to. Our findings support the need for routine monitoring for signs of misuse among those prescribed gabapentinoids.

  5. Prevalence of obesity in Switzerland 1992-2007: the impact of education, income and occupational class.

    PubMed

    Faeh, D; Braun, J; Bopp, M

    2011-03-01

    Prevalence of excess weight varies substantially by socioeconomic position (SEP). SEP can be defined with different indicators. The strength of the association of SEP with excess weight differs by SEP indicator, between populations and over time. We examined the prevalence of overweight and obesity (body mass index 25-29.9 and ≥30 kg m(-2) ) in Switzerland by educational level, household income tertile and occupational class (three categories for each indicator). Self-reported data stem from four cross-sectional population surveys including 53 588 persons aged between 25 and 74 years. The overall prevalence of overweight increased between 1992 and 2007 from 37.4% to 41.4% in men and from 18.8% to 21.9% in women. Obesity prevalence increased from 7.2% to 9.7% in men and from 5.4% to 8.6% in women. Inequalities were calculated with multivariable logistic regression. Inequalities were larger in women than in men and for obesity than for overweight. However, overweight and obesity inequalities did not significantly change over time, despite overall increasing prevalence. Although all SEP indicators were independently associated with excess weight, the association was strongest with education, particularly in women. Programmes and policies aimed at preventing excess weight should target individuals with low education early in life. © 2010 The Authors. obesity reviews © 2010 International Association for the Study of Obesity.

  6. Annual Report to the Nation on the Status of Cancer, 1975–2007, Featuring Tumors of the Brain and Other Nervous System

    PubMed Central

    Ward, Elizabeth; McCarthy, Bridget J.; Schymura, Maria J.; Eheman, Christie; Jemal, Ahmedin; Anderson, Robert N.; Ajani, Umed A.; Edwards, Brenda K.

    2011-01-01

    Background The American Cancer Society, the Centers for Disease Control and Prevention (CDC), the National Cancer Institute, and the North American Association of Central Cancer Registries (NAACCR) collaborate annually to provide updated information on cancer occurrence and trends in the United States. This year’s report highlights brain and other nervous system (ONS) tumors, including nonmalignant brain tumors, which became reportable on a national level in 2004. Methods Cancer incidence data were obtained from the National Cancer Institute, CDC, and NAACCR, and information on deaths was obtained from the CDC’s National Center for Health Statistics. The annual percentage changes in age-standardized incidence and death rates (2000 US population standard) for all cancers combined and for the top 15 cancers for men and for women were estimated by joinpoint analysis of long-term (19922007 for incidence; 1975–2007 for mortality) trends and short-term fixed interval (1998–2007) trends. Analyses of malignant neuroepithelial brain and ONS tumors were based on data from 1980–2007; data on nonmalignant tumors were available for 2004–2007. All statistical tests were two-sided. Results Overall cancer incidence rates decreased by approximately 1% per year; the decrease was statistically significant (P < .05) in women, but not in men, because of a recent increase in prostate cancer incidence. The death rates continued to decrease for both sexes. Childhood cancer incidence rates continued to increase, whereas death rates continued to decrease. Lung cancer death rates decreased in women for the first time during 2003–2007, more than a decade after decreasing in men. During 2004–2007, more than 213 500 primary brain and ONS tumors were diagnosed, and 35.8% were malignant. From 1987–2007, the incidence of neuroepithelial malignant brain and ONS tumors decreased by 0.4% per year in men and women combined. Conclusions The decrease in cancer incidence and

  7. Czech Registry of Monoclonal Gammopathies - Technical Solution, Data Collection and Visualisation.

    PubMed

    Brozova, L; Schwarz, D; Snabl, I; Kalina, J; Pavlickova, B; Komenda, M; Jarkovský, J; Němec, P; Horinek, D; Stefanikova, Z; Pour, L; Hájek, R; Maisnar, V

    2017-01-01

    The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.

  8. Predictors of influenza vaccination in the Cystic Fibrosis Foundation patient registry, 2006 through 2007.

    PubMed

    Ortiz, Justin R; Neuzil, Kathleen M; Victor, John C; Aitken, Moira L; Goss, Christopher H

    2010-12-01

    Influenza vaccination is recommended for all persons with cystic fibrosis (CF). Despite this recommendation, no study has been performed to determine factors associated with receipt of influenza vaccination among persons with CF. We conducted a 2-year cohort study from 2006 through 2007 using the CF Foundation (CFF) Patient Registry to assess predictors of influenza vaccination with logistical regression modeling. In 2006, the cohort consisted of 16,435 persons with vaccination data seen at CFF care centers. Vaccination rates were high for children aged < 5 years (90.5%), children 5 to < 18 years (91.1%), and adults (87.9%). In 2006, decreased odds of vaccination were seen among adults with other or unknown insurance (0.37; 95% CI, 0.15-0.87). Among children 5 to < 18 years and adults, decreased odds of vaccination were seen among Hispanics (children, 0.74; 95% CI, 0.55-0.98; adults, 0.67; 95% CI, 0.46-0.98) and with use of oxygen therapy (children, 0.55; 95% CI, 0.38-0.78; adults, 0.68; 95% CI, 0.55-0.86), whereas four or more clinic visits annually was associated with increased odds of vaccination (children, 2.33; 95% CI, 1.92-2.84; adults, 2.05; 95% CI, 1.71-2.47). Findings associated with decreased vaccine receipt remained significant in sensitivity analyses that assumed missing vaccination data were vaccine positive. Overall influenza vaccination rates are very high in the US CF population. Knowledge of influenza vaccination predictors among persons with CF may aid clinicians in targeting patients at greater risk for influenza infection. These data may have important implications for the evolving pandemic 2009 influenza A(H1N1).

  9. [AIDS mortality in Mexico from 1983 to 1992. The trends and years of potential life lost].

    PubMed

    Izazola-Licea, J A; Valdez-García, M; Sánchez-Pérez, H J; del Río-Chiriboga, C

    1995-01-01

    To describe trends in AIDS mortality in Mexico from 1983 to 1992, as well as years of potential life lost (YPLL) and years of potential productive life lost (YPPLL) due to AIDS. A retrospective review of databases available in Mexico that code mortality from AIDS was performed. Since AIDS was not coded specifically as a cause of death until 1988, for the period 1983-1987 the database of AIDS cases from the national AIDS registry provided by the Instituto Nacional de Diagnóstico y Referencia Epidemiológicos of the Ministry of Health was used. For the 1988-1992 period, a review of the mortality registry was provided by the Dirección General de Estadística, Informática y Evaluación of the Ministry of Health. To calculate YPLL and YPPLL we used the upper limit of expected life in Mexico for 1990 (70.79 years for men and 75.71 for women). Through 1992, there have been 8,204 deaths attributable to AIDS in Mexico (86% were men) with a rate of 2.9 deaths/100,000. In 1992 AIDS was the 19th leading cause of death in the country. The most affected age groups are the 25-34 and 35-44 years-old (especially amongst men) in which AIDS has now displaced pulmonary tuberculosis, suicide and self-inflicted injuries, diabetes mellitus, cerebro-vascular disease and alcohol dependency syndrome as leading causes of death in men. Our data suggests that AIDS has caused, from 1983 through 1992, 247,045 YPLL in men and 48,703 in women as well as 206,211 YPPLL in men and 29,793 in women. AIDS is at present one of the leading causes of death in Mexico. However, due to under-reporting, these estimates should be considered conservative and as lower-bound estimates. This data suggests that professionals are over-represented among AIDS cases, in comparison with the 1990 Population Census. This does not happen to be the case among women who are housewives.

  10. From a paper-based to an electronic registry in physiotherapy.

    PubMed

    Buyl, Ronald; Nyssen, Marc

    2008-01-01

    During the past decade the healthcare industry has evolved from paper-based storage of clinical data into the digital era. Electronic healthcare records play a crucial role to meet the growing need for integrated data-storage and data communication. In this context a new law was issued in Belgium on December 7th, 2005, which requires physiotherapists (but also nurses and speech therapists) to keep an electronic version of the registry. This (electronic) registry contains all physiotherapeutic acts, starting from January 1, 2007. Up until that day, a paper version of the registry had to be created every month.This article describes the development of an electronic version of the registry that not only meets all legal constraints, but also enables to verify the traceability and inalterability of the generated documents, by means of SHA-256 codes. One of the major concerns of the process was that the rationale behind the electronic registry would conform well to the common practice of the physiotherapist. Therefore we opted for a periodic recording of a standardized "image" of the controllable data, in the patient database of the software-system, into the XML registry messages. The proposed XSLT schema can also form a basis for the development of tools that can be used by the controlling authorities. Hopefully the electronic registry for physiotherapists will be a first step towards the future development of a fully integrated electronic physiotherapy record.By means of a certification procedure for the software systems, we succeeded in developing a user friendly system that enables end-users that use a quality labeled software package, to automatically produce all the legally necessary documents concerning the registry. Moreover, we hope that this development will be an incentive for non-users to start working in an electronic way.

  11. Population Support Before and After the Implementation of Smoke-Free Laws in the United States: Trends From 19922007

    PubMed Central

    Nagelhout, Gera E.; Wolfson, Tanya; Zhuang, Yue-Lin; Gamst, Anthony; Willemsen, Marc C.

    2015-01-01

    Introduction: Several states implemented comprehensive smoke-free laws in workplaces (14 states), restaurants (17 states), and bars (13 states) between 2002 and 2007. We tested the hypothesis that public support for smoke-free laws increases at a higher rate in states that implemented smoke-free laws between 2002 and 2007 (group A) than in states that implemented smoke-free laws after that time or not at all (group B). The period before the implementation (1992–2001) was also considered. Methods: Data was used from the Current Population Survey (CPS) Tobacco Use Supplements (TUS), which is representative for the U.S. adult population. Respondents were asked whether they thought smoking should not be allowed in indoor work areas, restaurants, and bars and cocktail lounges. Differences in trends were analyzed with binomial mixed effects models. Results: Population support for smoke-free restaurants and bars was higher among group A than among group B before 2002. After 2002, support for smoke-free restaurants and bars increased at a higher rate among group A than among group B. Population support for smoke-free workplaces did not differ between group A and B, and the increase in support for smoke-free workplaces also did not differ between these groups. Conclusions: The positive association between the implementation of smoke-free restaurant and bar laws and the rate of increase in support for these laws partly supported the hypothesis. The implementation of the laws may have caused support to increase, but also states that have higher support may have been more likely to implement smoke-free laws. PMID:25143293

  12. [A survey on fatal work accidents based on Mortality Registry data: results of the Tuscany study on INAIL and RMR cases in the period 1992-2996].

    PubMed

    Chellini, Elisabetta; Baldasseroni, Alberto; Giovannetti, Lucia; Zoppi, Ombretta

    2002-01-01

    Work-related deaths are important "sentinel events" of unsuccessful prevention. In Italy the most exhaustive source of such events is the National Fund for Occupational Diseases (INAIL), but the amount of cases from this source seems to be underestimated due to the fact that it refers only to cases occurred to subjects insured by the Fund. A previous survey estimated the real amount of work-related deaths 10-20% higher than that quantified by INAIL. This study evaluated the contribute of the two most important sources (INAIL and the Regional Mortality Registry of Tuscany-RMR) in estimating the number of these cases in Tuscany in the period 1992-96. Cases were identified from each source, and then it was applied a capture-recapture method to size the cases from work-related accident different from road accidents. RMR appeared to be the most exhaustive source with 72.3% completeness versus 56.4% completeness of INAIL source. Nevertheless the last one must be considered the primary source, more specific and accurate, and since few years also timely, than any other one. Work-related deaths from road accident represent 35.9% of INAIL cases but they are difficult to be identified from RMR and were not considered in this study. In conclusion the mortality data should be used for an epidemiologic surveillance system on work-related deaths not due to road accident in order to identify cases occurred to subjects not insured by INAIL (and therefore not defined by the Fund). These deaths are also important in terms of public health. Cases identified only from RMR, occurred in Tuscany in 1992-96, were 155: the vast majority occurred to farmers (mainly pensioners, and due to caterpillar upsetting), to bricklayers, to railway workers, to soldiers and to entrepreneurs.

  13. eRegistries: Electronic registries for maternal and child health.

    PubMed

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

    2016-01-19

    The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health

  14. National trends in occupational injuries before and after 1992 and predictors of workers' compensation costs.

    PubMed

    Bhushan, Abhinav; Leigh, J Paul

    2011-01-01

    Numbers and costs of occupational injuries and illnesses are significant in terms of morbidity and dollars, yet our understanding of time trends is minimal. We investigated trends and addressed some common hypotheses regarding causes of fluctuations. We pulled data on incidence rates (per 100 full-time employed workers) for injuries and illnesses from the U.S. Bureau of Labor Statistics and on costs and benefits from the National Academy of Social Insurance for 1973 through 2007. Rates reflected all injury and illness cases, lost work-time cases, and cases resulting in at least 31 days away from work. We adjusted dollar costs (premiums) and benefits for inflation and measured them per employed worker. We plotted data in time-trend charts and ran linear regressions. From 1973 to 1991, there was a weak to nonexistent downward trend for injury and illness rates, and rates were strongly and negatively correlated with the unemployment rate. From 1992 to 2007, there were strong, consistent downward trends, but no longer were there statistically significant correlations with unemployment. Significant predictors (and signs) of workers' compensation premiums for 1973-2007 included medical price inflation (positive), number of lost-time injuries (positive), the Dow Jones Industrial Average (negative), and inflation-adjusted interest rate on U.S. Treasury bonds (negative). Dollars of benefits were positively and significantly predicted by medical inflation and number of lost-time cases. For 1992-2007, the Dow Jones variable was the only robust predictor of premiums; the number of injuries was not a significant positive predictor. We had two major conclusions. First, the year 1992 marked a sharp contrast in trends and correlations between unemployment and incidence rates for occupational injuries and illnesses. Second, for the entire time period (1973-2007), insurance carriers' premiums were strongly associated with returns on investments.

  15. National Trends in Occupational Injuries Before and After 1992 and Predictors of Workers' Compensation Costs

    PubMed Central

    Bhushan, Abhinav; Leigh, J. Paul

    2011-01-01

    Objective Numbers and costs of occupational injuries and illnesses are significant in terms of morbidity and dollars, yet our understanding of time trends is minimal. We investigated trends and addressed some common hypotheses regarding causes of fluctuations. Methods We pulled data on incidence rates (per 100 full-time employed workers) for injuries and illnesses from the U.S. Bureau of Labor Statistics and on costs and benefits from the National Academy of Social Insurance for 1973 through 2007. Rates reflected all injury and illness cases, lost work-time cases, and cases resulting in at least 31 days away from work. We adjusted dollar costs (premiums) and benefits for inflation and measured them per employed worker. We plotted data in time-trend charts and ran linear regressions. Results From 1973 to 1991, there was a weak to nonexistent downward trend for injury and illness rates, and rates were strongly and negatively correlated with the unemployment rate. From 1992 to 2007, there were strong, consistent downward trends, but no longer were there statistically significant correlations with unemployment. Significant predictors (and signs) of workers' compensation premiums for 1973–2007 included medical price inflation (positive), number of lost-time injuries (positive), the Dow Jones Industrial Average (negative), and inflation-adjusted interest rate on U.S. Treasury bonds (negative). Dollars of benefits were positively and significantly predicted by medical inflation and number of lost-time cases. For 19922007, the Dow Jones variable was the only robust predictor of premiums; the number of injuries was not a significant positive predictor. Conclusion We had two major conclusions. First, the year 1992 marked a sharp contrast in trends and correlations between unemployment and incidence rates for occupational injuries and illnesses. Second, for the entire time period (1973–2007), insurance carriers' premiums were strongly associated with returns on

  16. 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.

  17. The antiretrovirals in pregnancy registry: a fifteenth anniversary celebration.

    PubMed

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

    2007-02-01

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

  18. Utilization of Clinical Trials Registries in Obstetrics and Gynecology Systematic Reviews.

    PubMed

    Bibens, Michael E; Chong, A Benjamin; Vassar, Matt

    2016-02-01

    To evaluate the use of clinical trials registries in published obstetrics and gynecologic systematic reviews and meta-analyses. We performed a metaepidemiologic study of systematic reviews between January 1, 2007, and December 31, 2015, from six obstetric and gynecologic journals (Obstetrics & Gynecology, Obstetrical & Gynecological Survey, Human Reproduction Update, Gynecologic Oncology, British Journal of Obstetrics and Gynaecology, and American Journal of Obstetrics & Gynecology). All systematic reviews included after exclusions were independently reviewed to determine whether clinical trials registries had been included as part of the search process. Studies that reported using a trials registry were further examined to determine whether trial data were included in the analysis of these systematic reviews. Our initial search resulted in 292 articles, which was narrowed to 256 after exclusions. Of the 256 systematic reviews meeting our selection criteria, 47 (18.4%) used a clinical trials registry. Eleven of the 47 (23.4%) systematic reviews found unpublished data and two included unpublished data in their results. A majority of systematic reviews in clinical obstetrics and gynecology journals do not conduct searches of clinical trials registries or do not make use of data obtained from these searches. Failure to make use of such data may lead to an inaccurate summary of available evidence and may contribute to an overrepresentation of published, statistically significant outcomes.

  19. The Epidemic of Non-Hodgkin Lymphoma in the United States: Disentangling the Effect of HIV, 1992–2009

    PubMed Central

    Shiels, Meredith S.; Engels, Eric A.; Linet, Martha S.; Clarke, Christina A.; Li, Jianmin; Hall, H. Irene; Hartge, Patricia; Morton, Lindsay M.

    2013-01-01

    Background For decades, non-Hodgkin lymphoma (NHL) incidence has been increasing worldwide. NHL risk is strongly increased among HIV-infected people. Our understanding of trends in NHL incidence has been hampered by difficulties in separating HIV-infected NHL cases from general population rates. Materials and Methods NHL incidence data during 1992–2009 were derived from 10 U.S. SEER cancer registries with information on HIV status at NHL diagnosis. The CDC estimated the number of people living with HIV in the registry areas. The proportion of NHL cases with HIV and NHL rates in the total and the HIV-uninfected populations were estimated. Time trends were assessed with Joinpoint analyses. Results Of 115,643 NHL cases diagnosed during 1992–2009, 5.9% were HIV-infected. The proportions of NHL cases with HIV were highest for diffuse large B-cell (DLBCL; 7.8%), Burkitt (26.9%), and peripheral T-cell lymphomas (3.2%) with low proportions (≤1.1%) in the other subtypes. NHL rates in the total population increased 0.3% per year during 1992–2009. However, rates of NHL in HIV-uninfected people increased 1.4% per year during 1992–2003, before becoming stable through 2009. Similar trends were observed for DLBCL and follicular lymphoma in HIV-uninfected people; rates increased 2.7% per year until 2003 and 1.7% per year until 2005, respectively, before stabilizing. Conclusions NHL incidence rates in the U.S. have plateaued over the last 5–10 years, independent of HIV infection. Impact Though the causes of the long-term increase in NHL incidence rates in the U.S. remain unknown, general population rates of NHL have stabilized since the early 2000s, independent of HIV. PMID:23595542

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

    PubMed

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

    2015-10-01

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

  1. Colorectal cancer incidence in 5 Asian countries by subsite: An analysis of Cancer Incidence in Five Continents (1998-2007).

    PubMed

    Park, Hye-Min; Woo, Hyeongtaek; Jung, Sun Jae; Jung, Kyu-Won; Shin, Hai-Rim; Shin, Aesun

    2016-12-01

    Colorectal cancer is the fourth most common cancer in Asia. However, the trends in colorectal cancer incidence by subsite have not been analyzed across Asian countries. We used the most recent, high quality data from 6 cancer registries for two 5-year periods, 1998-2002 and 2003-2007, from Cancer Incidence in Five Continents to estimate colorectal cancer incidence by subsite in 5 Asian countries. Cases with overlapping lesions or otherwise unspecified colon cancer were re-distributed as proximal or distal colon cancer. Age-standardized incidence rates (ASRs) per 100,000 population and incidence rate ratios from 1998 to 2002 to 2003-2007 were calculated for each subsite. For 2003-2007, men in Miyagi, Japan, had the highest ASR for cancer in the proximal colon, distal colon and rectum. Men of Jewish ancestry in Israel had a high ASR for proximal and distal colon cancer, but the lowest ASR for rectal cancer. The proportion of rectal cancer was highest among Korean men (51.39%) and lowest among Israeli women (26.6%). From 1998-2002 to 2003-2007, rectal cancer incidence did not significantly change in most registries, except for men in Miyagi, Japan, and both sexes in Korea. However, during the same period cancer incidence in the proximal and distal colon increased in most registries. In conclusion, there was substantial variation in subsite distributions of colorectal cancer in Asian registries and increases in overall incidence of colorectal cancer could be attributed to increases in colon cancer. Copyright © 2016 Elsevier Ltd. All rights reserved.

  2. 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

  3. 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

  4. 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.

  5. 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

  6. 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.

  7. Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008

    ERIC Educational Resources Information Center

    Rosenberg, Rebecca E.; Mandell, David S.; Farmer, Janet E.; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

    2010-01-01

    Patterns of current psychotropic medication use among 5,181 children with autism spectrum disorders (ASD) enrolled in a Web-based registry were examined. Overall, 35% used at least one psychotropic medication, most commonly stimulants, neuroleptics, and/or antidepressants. Those who were uninsured or exclusively privately insured were less likely…

  8. 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 ...

  9. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

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

    Walker, Gary V.; Giordano, Sharon H.; Williams, Melanie

    2013-07-15

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ{sup 2} were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York,more » and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data.« less

  10. Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

    PubMed Central

    2011-01-01

    Background Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered. PMID:21235819

  11. The United States Transuranium and Uranium Registries. Revision 1, [Annual] report, October 1, 1990--April 1992

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

    Kathren, R.L.

    1992-09-01

    This paper describes the history, organization, activities and recent scientific accomplishments of the United States Transuranium and Uranium Registries. Through voluntary donations of tissue obtained at autopsies, the Registries carry out studies of the concentration, distribution and biokinetics of plutonium in occupationally exposed persons. Findings from tissue analyses from more than 200 autopsies include the following: a greater proportion of the americium intake, as compared with plutonium, was found in the skeleton; the half-time of americium in liver is significantly shorter than that of plutonium; the concentration of actinide in the skeleton is inversely proportional to the calcium and ashmore » content of the bone; only a small percentage of the total skeletal deposition of plutonium is found in the marrow, implying a smaller risk from irradiation of the marrow relative to the bone surfaces; estimates of plutonium body burden made from urinalysis typically exceed those made from autopsy data; pathologists were unable to discriminate between a group of uranium workers and persons without known occupational exposure on the basis of evaluation of microscopic kidney slides; the skeleton is an important long term depot for uranium, and that the fractional uptake by both skeleton and kidney may be greater than indicated by current models. These and other findings and current studies are discussed in depth.« less

  12. 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.

  13. [The social recruitment of medical students in year group 2006 and 2007 at the University of Copenhagen].

    PubMed

    Pedersen, Laura Toftegaard; Bak, Nanna Hasle; Petersson, Birgit H

    2010-01-18

    To study the social recruitment of medical students at the University of Copenhagen in 2006 and 2007 and compare it to the social recruitment in 1992, the Danish population and other study programmes. Questionnaire survey of first-year medical students from year 2006-2007. The population comprised 446 students, of whom 71% were women. They were categorised according to parents' social class, parents' education and presence of doctors in the family. 81% of the students belonged to social class I and II, 41% of the students' parents had a higher education and 17% had at least one parent who was a trained physician. For the Danish population and for students at Psychology and the Humanities, the numbers were significantly lower. Fewer students were recruited from the higher social classes in 1992, but more students had parents with higher education. In 1992, the quota system had an equalizing effect on the distribution across social classes; this effect did not seem to be present in 2006-07. The distribution of medical students across social classes is less equal than in the rest of the Danish population and has remained close to unchanged in the period 1992 to 2007. Furthermore, the medical school recruits more students from higher socioeconomic backgrounds than other fields of study at the University of Copenhagen. There is a need for an increased focus on the social recruitment and an intensified effort to recruit a more differentiated segment of students, among others through an increase in quota 2 admission rates.

  14. 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

  15. Is Student Pathology Really Increasing? Seven Measures of the Acuity of Counseling Center Clients, 1992-2007

    ERIC Educational Resources Information Center

    Schwartz, Allan J.

    2015-01-01

    Since 1992, an overwhelming consensus among counseling center directors has asserted that, year after year, the severity or psychopathology of counseling center clients has been increasing. In contrast to this perceptual consensus, the search for confirming evidence using client self-report measures has been frustrating. These studies have…

  16. 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

  17. Ecological restoration experiments (1992-2007) at the G. A. Pearson Natural Area, Fort Valley Experimental Forest

    Treesearch

    Margaret M. Moore; W. Wallace Covington; Peter Z. Fule; Stephen C. Hart; Thomas E. Kolb; Joy N. Mast; Stephen S. Sackett; Michael R. Wagner

    2008-01-01

    In 1992 an experiment was initiated at the G. A. Pearson Natural Area on the Fort Valley Experimental Forest to evaluate long-term ecosystem responses to two restoration treatments: thinning only and thinning with prescribed burning. Fifteen years of key findings about tree physiology, herbaceous, and ecosystem responses are presented.

  18. 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.

  19. 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

  20. 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.

  1. British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry

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

    Uberoi, Raman, E-mail: raman.Uberoi@orh.nhs.uk; Tapping, Charles Ross; Chalmers, Nicholas

    Purpose: The British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry was produced to provide an audit of current United Kingdom (UK) practice regarding placement and retrieval of IVC filters to address concerns regarding their safety. Methods: The IVC filter registry is a web-based registry, launched by the BSIR on behalf of its membership in October 2007. This report is based on prospectively collected data from October 2007 to March 2011. This report contains analysis of data on 1,434 IVC filter placements and 400 attempted retrievals performed at 68 UK centers. Data collected included patient demographics, insertionmore » and retrieval data, and patient follow-up. Results: IVC filter use in the majority of patients in the UK follows accepted CIRSE guidelines. Filter placement is usually a low-risk procedure, with a low major complication rate (<0.5 %). Cook Gunther Tulip (560 filters: 39 %) and Celect (359 filters: 25 %) filters constituted the majority of IVC filters inserted, with Bard G2, Recovery filters, Cordis Trapease, and OptEase constituting most of the remainder (445 filters: 31 %). More than 96 % of IVC filters deployed as intended. Operator inexperience (<25 procedure) was significantly associated with complications (p < 0.001). Of the IVC filters initially intended for temporary placement, retrieval was attempted in 78 %. Of these retrieval was technically successful in 83 %. Successful retrieval was significantly reduced for implants left in situ for >9 weeks versus those with a shorter dwell time. New lower limb deep vein thrombosis (DVT) and/or IVC thrombosis was reported in 88 patients following filter placement, there was no significant difference of incidence between filter types. Conclusions: This registry report provides interventional radiologists and clinicians with an improved understanding of the technical aspects of IVC filter placement to help improve practice, and the potential consequences of IVC

  2. 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/

  3. 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.

  4. 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.

  5. 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.

  6. The Color of AIDS: An Analysis of newspaper coverage of HIV/AIDS in the United States from 1992-2007.

    PubMed

    Stevens, Robin; Hull, Shawnika J

    Although overall HIV rates have declined in the U.S. over the past two decades, these declines have been accompanied by steady growth in infection rates among African Americans, creating persistent racial disparities in HIV infection. News media have been instrumental in educating and informing the public about the epidemic. This content analytic study examines the frequency and content of coverage of HIV/AIDS in national and local U.S. daily newspapers from December 1992 through December 2007 with a focus on the presentation of risk by population subgroups. A computerized search term was used to identify HIV/AIDS-related news coverage from 24 daily U.S. newspapers and one wire service across a 15-year period (N = 53,934 stories). Human and computerized coding methods were used to examine patterns in frequency and content in the sample. Results indicate a decline in coverage of the epidemic over the study period. There was also a marked shift in the portrayal of risk in the U.S., from a domestic to an international focus. When coverage did address HIV/AIDS among groups with disproportionately high risk in the U.S., it typically failed to provide context for the disparity beyond individual behavioral risk factors. The meta-message of news coverage of HIV during this period may have reduced the visibility of the impact of HIV/AIDS on Americans. The practice of reporting the racial disparity without providing context may have consequences for the general public's ability to interpret these disparities.

  7. [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?

  8. eRegistries: governance for electronic maternal and child health registries.

    PubMed

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

    2016-09-23

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

  9. 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.

  10. 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

  11. 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

  12. Hepatitis A Surveillance and Vaccine Use in China From 1990 Through 2007

    PubMed Central

    Cui, Fuqiang; Hadler, Stephen C; Zheng, Hui; Wang, Fuzhen; Zhenhua, Wu; Yuansheng, Hu; Gong, Xiaohong; Chen, Yuansheng; Liang, Xiaofeng

    2009-01-01

    Background Hepatitis A vaccines have been highly effective in preventing hepatitis A. To investigate the epidemiology of hepatitis A in China after hepatitis A vaccine became available, we reviewed reported cases of hepatitis A and the use of hepatitis A vaccine in China during the period from 1990 through 2007. Methods Data from the National Notifiable Disease Reporting System from 1990 to 2007 and the Emergency Events Reporting System from 2004 to 2007 were reviewed and epidemiologic characteristics analyzed. Hepatitis A vaccine distribution between 1992 and 2007 was also reviewed. Results The incidence of hepatitis A has declined by 90% since 1990, from 56 to 5.9 per 105/year. Declines in age-specific incidence were seen in all age groups, most dramatically among children younger than 10 years. Disease incidence still varies substantially: poorer western provinces have had the highest incidences since 2000. In high-incidence provinces, children younger than 10 years continue to have a high disease incidence. Only 50% of cases were laboratory-confirmed, and only 3% occurred in reported local outbreaks. Over 156 million doses of hepatitis A vaccine have been distributed since 1992, and use has continued to increase since 2003. Conclusions Incidence of hepatitis A has decreased in all age groups, likely due to changing socioeconomic conditions and increasing hepatitis A vaccine use. Nevertheless, western populations remain at high risk, with transmission predominantly occurring among children. The epidemiology of hepatitis A transmission is not well understood. Improved surveillance with better laboratory confirmation is needed to monitor the impact of universal hepatitis A vaccination of young children; this strategy began to be implemented in 2008. PMID:19561383

  13. 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.

  14. 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

  15. 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.

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

    PubMed Central

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

    2013-01-01

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

  17. The Color of AIDS: An Analysis of newspaper coverage of HIV/AIDS in the United States from 19922007

    PubMed Central

    Stevens, Robin; Hull, Shawnika J.

    2015-01-01

    Although overall HIV rates have declined in the U.S. over the past two decades, these declines have been accompanied by steady growth in infection rates among African Americans, creating persistent racial disparities in HIV infection. News media have been instrumental in educating and informing the public about the epidemic. This content analytic study examines the frequency and content of coverage of HIV/AIDS in national and local U.S. daily newspapers from December 1992 through December 2007 with a focus on the presentation of risk by population subgroups. A computerized search term was used to identify HIV/AIDS-related news coverage from 24 daily U.S. newspapers and one wire service across a 15-year period (N = 53,934 stories). Human and computerized coding methods were used to examine patterns in frequency and content in the sample. Results indicate a decline in coverage of the epidemic over the study period. There was also a marked shift in the portrayal of risk in the U.S., from a domestic to an international focus. When coverage did address HIV/AIDS among groups with disproportionately high risk in the U.S., it typically failed to provide context for the disparity beyond individual behavioral risk factors. The meta-message of news coverage of HIV during this period may have reduced the visibility of the impact of HIV/AIDS on Americans. The practice of reporting the racial disparity without providing context may have consequences for the general public’s ability to interpret these disparities. PMID:26586923

  18. Asteroid Lightcurve Analysis at the Oakley Observatory - March/April 2007

    NASA Astrophysics Data System (ADS)

    Sauppe, Jason; Torno, Steven; Lemke-Oliver, Robert; Ditteon, Richard

    2007-12-01

    Lightcurves for 24 asteroids were collected over six nights of observing during March and April of 2007 at the Oakley Observatory. The asteroids were: 234 Barbara, 279 Thule, 303 Josephina, 348 May, 621 Werdandi, 715 Transvaalia, 791 Ani, 1132 Hollandia, 1164 Kobolda, 1184 Gaea, 1385 Gelria, 1534 Nasi, 2341 Aoluta, 2582 Harimaya-Bashi, 2887 Krinov, 3166 Klondike, 3310 Patsy, 3451 Mentor, 3497 Innanen, 3575 Anyuta, 5484 Inoda, (7792) 1995 WZ3, (9873) 1992 GH, and (41577) 2000 SV2.

  19. [Types of medical registries - definitions, methodological aspects and quality of the scientific work with registries].

    PubMed

    Mathis-Edenhofer, Stefan; Piso, Brigitte

    2011-12-01

    This work presents a comprehensive list of registry definitions including broader and narrower definitions. Compared to each other different methodological issues can be identified. Some of these issues are common for all registry types; some can be assigned more easily to a specific registry type. Instruments for evaluating the quality of registers reflect many of the mentioned aspects. Generally, and especially at registers with a descriptive or exploratory research dimension it is important to consider their intended purpose and in about it was achieved. This includes, for instance, whether the purpose and the methodology are coordinated. From the start of registration an initiator should be - based on the purpose - aware of the methodological dimension of the registry. This helps to apply the correct type of the registry, the appropriate guidance and, ultimately, the arguments for the effort (cost-benefit ratio).

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

    PubMed Central

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

    2008-01-01

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

  1. Ecological restoration experiments (1992-2007) at the G.A. Pearson Natural Area, Fort Valley Experimental Forest (P-53)

    Treesearch

    Margaret M. Moore; Wallace Covington; Peter Z. Fulé; Stephen C. Hart; Thomas E. Kolb; Joy N. Mast; Stephen S. Sackett; Michael R. Wagner

    2008-01-01

    In 1992 an experiment was initiated at the G. A. Pearson Natural Area on the Fort Valley Experimental Forest to evaluate long-term ecosystem responses to two restoration treatments: thinning only and thinning with prescribed burning. Fifteen years of key findings about tree physiology, herbaceous, and ecosystem responses are presented.

  2. Rare disease registries: a call to action.

    PubMed

    Lacaze, Paul; Millis, Nicole; Fookes, Megan; Zurynski, Yvonne; Jaffe, Adam; Bellgard, Matthew; Winship, Ingrid; McNeil, John; Bittles, Alan H

    2017-09-01

    When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This 'umbrella' organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD. © 2017 Royal Australasian College of Physicians.

  3. Immunization registries in the EMR Era

    PubMed Central

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

    2013-01-01

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

  4. [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.

  5. Substantial underreporting of anastomotic leakage after anterior resection for rectal cancer in the Swedish Colorectal Cancer Registry.

    PubMed

    Rutegård, Martin; Kverneng Hultberg, Daniel; Angenete, Eva; Lydrup, Marie-Louise

    2017-12-01

    The causes and effects of anastomotic leakage after anterior resection are difficult to study in small samples and have thus been evaluated using large population-based national registries. To assess the accuracy of such research, registries should be validated continuously. Patients who underwent anterior resection for rectal cancer during 2007-2013 in 15 different hospitals in three healthcare regions in Sweden were included in the study. Registry data and information from patient records were retrieved. Registered anastomotic leakage within 30 postoperative days was evaluated, using all available registry data and using only the main variable anastomotic insufficiency. With the consensus definition of anastomotic leakage developed by the International Study Group on Rectal Cancer as reference, validity measures were calculated. Some 1507 patients were included in the study. The negative and positive predictive values for registered anastomotic leakage were 96 and 88%, respectively, while the κ-value amounted to 0.76. The false-negative rate was 29%, whereas the false-positive rate reached 1.3% (the vast majority consisting of actual leaks, but occurring after postoperative day 30). Using the main variable anastomotic insufficiency only, the false-negative rate rose to 41%. There is considerable underreporting of anastomotic leakage after anterior resection for rectal cancer in the Swedish Colorectal Cancer Registry. It is probable that this causes an underestimation of the true effects of leakage on patient outcomes, and further quality control is needed.

  6. eXtended MetaData Registry

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

    2006-10-25

    The purpose of the eXtended MetaData Registry (XMDR) prototype is to demonstrate the feasibility and utility of constructing an extended metadata registry, i.e., one which encompasses richer classification support, facilities for including terminologies, and better support for formal specification of semantics. The prototype registry will also serve as a reference implementation for the revised versions of ISO 11179, Parts 2 and 3 to help guide production implementations.

  7. Cancer incidence and mortality in the municipality of Pasto, 1998 - 2007

    PubMed Central

    Bravo, Luis Eduardo; HidalgoTroya, Arsenio; Jurado, Daniel Marcelo; Bravo, Luisa Mercedes

    2012-01-01

    Introduction: In Colombia, information on cancer morbidity at the population level is limited. Incidence estimates for most regions are based on mortality data. To improve the validity of these estimates, it is necessary that other population-based cancer registries, as well as Cali, provide cancer risk information. Objective: To describe the incidence and cancer mortality in the municipality of Pasto within the 1998-2007 period. Methods: The study population belongs to rural and urban areas of the municipality of Pasto. Collection, processing, and systematization of the data were performed according to internationally standardized parameters for population-based cancer registries. The cancer incidence and mortality rates were calculated by gender, age, and tumor Results: During the 1998-2007 period 4,986 new cases of cancer were recorded of which 57.7% were in female. 2,503 deaths were presented, 52% in female. Neoplasm-associated infections are the leading cause of cancer morbidity in Pasto: stomach cancer in males and cervical cancer in females. Discussion: Cancer in general is a major health problem for the population of the municipality of Pasto. The overall behavior of the increasing incidence and cancer mortality in relation to other causes of death show the need to implement and strengthen prevention and promotion programs, focusing especially on tumors that produce greater morbidity and mortality in the population. PMID:24893298

  8. [The year 2002 national register on home-based parenteral nutrition].

    PubMed

    Moreno, J M; Planas, M; Lecha, M; Virgili, N; Gómez-Enterría, P; Ordóñez, J; de la Cuerda, C; Apezetxea, A; Marti, E; García Luna, P P; Forga, M T; Pérez de la Cruz, A; Muñoz, A; Bayo, P; Rodríguez, A; Chamorro, J; Bonada, A; Luengo, L M; Pedrón, C; Parés, R M

    2005-01-01

    To report on the results of the Registry on Home-based Parenteral Nutrition (HPN) of the NADYA-SENPE working group, corresponding to the year 2002. Compilation of the registry data loaded by the Units in charge of HPN patients care. It consists of an on-line registry available to the registered users of the group's web page (www.nadya-senpe.com). Epidemiological, diagnostic, access route, complications, hospital admissions, degree of disability, and course until December 31st of 2002. Data from 74 patients were gathered (56.8% women and 43.2% men), from 18 hospital centers. Mean age of adult patients was 49.4 +/- 15.5 years and 2.3-1.1 years for patients younger than 14 years (n=3 patients). Diseases that prompted the use of HPN were mesenteric ischemia (29.7%), followed by neoplasms (16.2%), radiation enteritis (12.2%), motility impairments (8.1%), and Crohn's disease (5.4%). Tunneled catheters were used in 52.7% of cases, as compared to 36.5% of subcutaneous reservoirs. Mean treatment duration was 8.7 +/- 4.4 months; 68.9% of patients remained on HPN for a duration longer than 6 months, and in 41.9% longer than one year. Patients' follow-up was mainly done from the reference hospital (87.8%), and the remaining patients (12.5%) by the home care team. In no case patients were followed by the primary care team or other specialists than the ones that prescribed nutritional support. In 94 cases there were complications related to nutritional therapy. The more frequent complications presented were infectious. These complications represented 1.84 admissions per patient. The mean number of visits was 12.9 per patient (10.2 routinary visits and 2.7 emergency visits). At the end of the year, we observed that 74.3% patients stayed in the program, whereas in the remaining 23.6% HPN had been discontinued. The main causes for discontinuation were death (52.9%), and switch to oral diet (23.5%) or enteral nutrition (11.8%). With regards to disability degree, 16.1% were confined

  9. Respiratory diseases registries in the national registry of rare diseases.

    PubMed

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

    2014-09-01

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

  10. Private provider participation in statewide immunization registries

    PubMed Central

    Clark, Sarah J; Cowan, Anne E; Bartlett, Diana L

    2006-01-01

    Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756). Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68%) and printable immunization records (N = 82, 55%) were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38%) and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%). Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87%) and to review immunization records of individual patients (N = 302, 81%). A minority reported using it to assess their practice's immunization coverage (N = 110, 29%) or generate reminder/recall notices (N = 54, 14%). Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%). Conclusion Most registry participants report active participation with few problems. The

  11. 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

  12. 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.

  13. 20 CFR 655.34 - Electronic job registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

  14. 20 CFR 655.34 - Electronic job registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

  15. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  16. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  17. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  18. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 3 2011-04-01 2011-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  19. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 3 2012-04-01 2012-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  20. Setting up of the Indian HIPEC Registry: A Registry for Indian Patients with Peritoneal Surface Malignancies.

    PubMed

    Bhatt, Aditi; Mehta, Sanket; Ramakrishnan As; Pande, Pankaj; Rajan, Firoz; Rangole, Ashvin; Saklani, Avanish; Sethna, Kayomarz; Singh, Shivendra; Zaveri, Shabber; Gopinath, K S

    2017-12-01

    There are various registries for patients with peritoneal metastases (PM) that aid pooling of data and generate evidence that dictates current clinical practice. This manuscript describes the setting up of the Indian HIPEC registry that was set up with a similar goal by a group of Indian surgeons. This is a registry for patients with PM treated with CRS and HIPEC in India. It also acts as a database for storing treatment-related information. Patients with PM from colorectal ovarian, gastric, appendiceal tumors, and other rare peritoneal tumors/metastases from rare tumors are enrolled in the registry. A coordinator updates the disease status of patients on a yearly basis. A private organization maintains the database. A non-disclosure agreement is signed between the company and each surgeon contributing to the registry to maintain confidentiality. For enrolling patients, securing institutional permission depends on the requirement of each institute; patient consent is mandatory. Data entry can be prospective or retrospective. To propose and conduct a study, the approval of a scientific committee linked to the registry is required. The Indian HIPEC registry is a practical database for Indian surgeons. There is no regulatory body that mandates collection and publication of scientific data in India. The onus is on each surgeon to capture valuable information pertaining to these common and rare diseases that could contribute to the existing scientific knowledge and guide the treatment of these patients in the future. The next challenge will be to enter data into the registry.

  1. Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management

    PubMed Central

    Backus, Lisa I.; Gavrilov, Sergey; Loomis, Timothy P.; Halloran, James P.; Phillips, Barbara R.; Belperio, Pamela S.; Mole, Larry A.

    2009-01-01

    The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated. PMID:19717794

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

    PubMed Central

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

    2016-01-01

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

  3. Evidence and practice in spine registries

    PubMed Central

    van Hooff, Miranda L; Jacobs, Wilco C H; Willems, Paul C; Wouters, Michel W J M; de Kleuver, Marinus; Peul, Wilco C; Ostelo, Raymond W J G; Fritzell, Peter

    2015-01-01

    Background and purpose We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the “quality of spine care” from spine registries. Methods To study the impact, the literature on all spinal disorders was searched. To study methodology, the search was restricted to degenerative spinal disorders. The risk of bias in the studies included was assessed with the Newcastle-Ottawa scale. Additionally, a survey among registry representatives was performed to acquire information about the methodology and practice of existing registries. Results 4,273 unique references up to May 2014 were identified, and 1,210 were eligible for screening and assessment. No studies on impact were identified, but 34 studies were identified to study the methodology. Half of these studies (17 of the 34) were judged to have a high risk of bias. The survey identified 25 spine registries, representing 14 countries. The organization of these registries, methods used, analytical approaches, and dissemination of results are presented. Interpretation We found a lack of evidence that registries have had an impact on the quality of spine care, regardless of whether intervention was non-surgical and/or surgical. To improve the quality of evidence published with registry data, we present several recommendations. Application of these recommendations could lead to registries showing trends, monitoring the quality of spine care given, and ultimately improving the value of the care given to patients with degenerative spinal disorders. PMID:25909475

  4. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

  5. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

  6. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

  7. 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.

  8. The value of trauma registries.

    PubMed

    Moore, Lynne; Clark, David E

    2008-06-01

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

  9. A Prototype Publishing Registry for the Virtual Observatory

    NASA Astrophysics Data System (ADS)

    Williamson, R.; Plante, R.

    2004-07-01

    In the Virtual Observatory (VO), a registry helps users locate resources, such as data and services, in a distributed environment. A general framework for VO registries is now under development within the International Virtual Observatory Alliance (IVOA) Registry Working Group. We present a prototype of one component of this framework: the publishing registry. The publishing registry allows data providers to expose metadata descriptions of their resources to the VO environment. Searchable registries can harvest the metadata from many publishing registries and make them searchable by users. We have developed a prototype publishing registry that data providers can install at their sites to publish their resources. The descriptions are exposed using the Open Archive Initiative (OAI) Protocol for Metadata Harvesting. Automating the input of metadata into registries is critical when a provider wishes to describe many resources. We illustrate various strategies for such automation, both currently in use and planned for the future. We also describe how future versions of the registry can adapt automatically to evolving metadata schemas for describing resources.

  10. The use of a medico economic database as a part of French apheresis registry.

    PubMed

    Kanouni, T; Aubas, P; Heshmati, F

    2017-02-01

    An apheresis registry is a part of each learned apheresis society. The interest in this is obvious, in terms of knowledge of the practice of apheresis, adverse events, and technical issues. However, because of the weight of data entry it could never be exhaustive and some data will be missing. While continuing our registry efforts and our efforts to match with other existing registries, we decided to extend the data collection to a medico-economic database that is available in France, the Programme de Médicalisation du Système d'Information (PMSI) that has covered reimbursement information for each public or private hospital since 2007. It contains almost all apheresis procedures in all apheresis fields, demographic patient data, and primary and related diagnoses, among other data. Although this data does not include technical apheresis issues or other complications of the procedures, its interest is great and it is complementary to the registry. From 2003-2014, we have recorded 250,585 apheresis procedures, for 48,428 patients. We showed that the data are reliable and exhaustive. The information shows a perfect real life practice in apheresis, regarding indications, the rhythm and the duration of apheresis treatment. This prospective data collection is sustainable and allows us to assess the impact of healthcare guidelines. Our objective is to extend the data collection and match it to other existing databases; this will allow us to conduct, for example, a cohort study specifically for ECP. Copyright © 2016 Elsevier Ltd. All rights reserved.

  11. The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.

    PubMed

    Mantick, Neal; Bachman, Eric; Baujat, Genevieve; Brown, Matt; Collins, Oliver; De Cunto, Carmen; Delai, Patricia; Eekhoff, Marelise; Zum Felde, Roger; Grogan, Donna Roy; Haga, Nobuhiko; Hsiao, Edward; Kantanie, Sharon; Kaplan, Frederick; Keen, Richard; Milosevic, Jelena; Morhart, Rolf; Pignolo, Robert; Qian, Xiaobing; di Rocco, Maja; Scott, Christiaan; Sherman, Adam; Wallace, Marin; Williams, Nicky; Zhang, Keqin; Bogard, Betsy

    2018-04-01

    The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry

  12. Index to Army Times 1992.

    DTIC Science & Technology

    1993-02-01

    AUTOMOBILES It pays to drive. Army Times; Sep. 28, 1992; 53(9): p. 2. MOVING, HOUSEHOLD--COSTS How much will it really cost? Army Times; June 22, 1992; 52(48...Army Times; Feb. 17, 1992; 52(29): p. 2. REPROGRAMMABLE MICROPROCESSOR SEE STINGER RMP (MISSILE) RESERVE COMMAND SEE ARMY RESERVE COM4MAND Nov. 2

  13. Changes in poisonings among adolescents in the UK between 1992 and 2012: a population based cohort study.

    PubMed

    Tyrrell, Edward G; Orton, Elizabeth; Tata, Laila J

    2016-12-01

    Poisonings are a common cause of morbidity and mortality among adolescents. Yet surveillance data indicating current incidence rates (IRs) and time trends are lacking, making policy development and service planning difficult. We utilised population based primary care data to estimate adolescent poisoning rates according to intent across the UK. A cohort study of 1 311 021 adolescents aged 10-17 years, between 1992 and 2012, was conducted using routine primary care data from The Health Improvement Network. IRs and adjusted IRRs with 95% CIs were calculated for all poisonings, intentional, unintentional, unknown intent and alcohol related poisonings, by age, sex, calendar time and socioeconomic deprivation. Overall poisoning incidence increased by 27% from the period 1992-1996 to 2007-2012, with the largest increases in intentional poisonings among females aged 16-17 years (IR 391.4/100 000 person years (PY), CI 328.9 to 465.7 for age 17 years in 1992-1996; 767.0/100 000 PY, CI 719.5 to 817.7 in 2007-2012) and alcohol related poisonings in females aged 15-16 years (IR 65.7/100 000 PY, CI 43.3 to 99.8 rising to 130.0/100 000 PY, CI 110.0 to 150.0 for age 15 years). A strong socioeconomic gradient for all poisonings persisted over time, with higher rates among the more deprived (IRR 2.63, CI 2.41 to 2.88 for the most vs least deprived quintile in 2007-2012). Adolescent poisonings, especially intentional poisonings, have increased substantially over time and remain associated with health inequalities. Social and psychological support for adolescents should be targeted at more deprived communities, and child and adolescent mental health and alcohol support service provision should be commissioned to reflect the changing need. 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/.

  14. Client interfaces to the Virtual Observatory Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

    2015-04-01

    The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

  15. 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

  16. 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

  17. 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

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

    PubMed Central

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

    2016-01-01

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

  19. 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.

  20. Cancer incidence and mortality in Mongolia - National Registry Data.

    PubMed

    Sandagdorj, Tuvshingerel; Sanjaajamts, Erdenechimeg; Tudev, Undarmaa; Oyunchimeg, Dondov; Ochir, Chimedsuren; Roder, David

    2010-01-01

    The National Cancer Registry of Mongolia began as a hospital-based registry in the early 1960s but then evolved to have a population-wide role. The Registry provides the only cancer data available from Mongolia for international comparison. The descriptive data presented in this report are the first to be submitted on cancer incidence in Mongolia to a peer-reviewed journal. The purpose was to describe cancer incidence and mortality for all invasive cancers collectively, individual primary sites, and particularly leading sites, and consider cancer control opportunities. This study includes data on new cancer cases registered in Mongolia in 2003-2007. Incidence and mortality rates were calculated as mean annual numbers per 100,000 residents. Age-standardized incidence (ASR) and age-standardized mortality (ASMR) rates were calculated from age-specific rates by weighting directly to the World Population standard. Between 2003 and 2007, 17,271 new cases of invasive cancer were recorded (52.2% in males, 47.7% in females). The five leading primary sites in males were liver, stomach, lung, esophagus, and colon/rectum; whereas in females they were liver, cervix, stomach, esophagus and breast. ASRs were lower in females than males for cancers of the liver at 63.0 and 99.1 per 100,000 respectively; cancers of the stomach at 19.1 and 42.1 per 100,000 respectively; and cancers of the lung at 8.3 and 33.2 per 100,000 respectively. Liver cancer was the most common cause of death in each gender, the ASMR being lower for females than males at 60.6 compared with 94.8 per 100,000. In females the next most common sites of cancer death were the stomach and esophagus, whereas in males, they were the stomach and lung. Available data indicate that ASRs of all cancers collectively have increased over the last 20 years. Rates are highest for liver cancer, at about four times the world average. The most common cancers are those with a primary site of liver, stomach and esophagus, for which

  1. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data

    PubMed Central

    Coleman, MP; Forman, D; Bryant, H; Butler, J; Rachet, B; Maringe, C; Nur, U; Tracey, E; Coory, M; Hatcher, J; McGahan, CE; Turner, D; Marrett, L; Gjerstorff, ML; Johannesen, TB; Adolfsson, J; Lambe, M; Lawrence, G; Meechan, D; Morris, EJ; Middleton, R; Steward, J; Richards, MA

    2011-01-01

    Summary Background Cancer survival is a key measure of the effectiveness of health-care systems. Persistent regional and international differences in survival represent many avoidable deaths. Differences in survival have prompted or guided cancer control strategies. This is the first study in a programme to investigate international survival disparities, with the aim of informing health policy to raise standards and reduce inequalities in survival. Methods Data from population-based cancer registries in 12 jurisdictions in six countries were provided for 2·4 million adults diagnosed with primary colorectal, lung, breast (women), or ovarian cancer during 1995–2007, with follow-up to Dec 31, 2007. Data quality control and analyses were done centrally with a common protocol, overseen by external experts. We estimated 1-year and 5-year relative survival, constructing 252 complete life tables to control for background mortality by age, sex, and calendar year. We report age-specific and age-standardised relative survival at 1 and 5 years, and 5-year survival conditional on survival to the first anniversary of diagnosis. We also examined incidence and mortality trends during 1985–2005. Findings Relative survival improved during 1995–2007 for all four cancers in all jurisdictions. Survival was persistently higher in Australia, Canada, and Sweden, intermediate in Norway, and lower in Denmark, England, Northern Ireland, and Wales, particularly in the first year after diagnosis and for patients aged 65 years and older. International differences narrowed at all ages for breast cancer, from about 9% to 5% at 1 year and from about 14% to 8% at 5 years, but less or not at all for the other cancers. For colorectal cancer, the international range narrowed only for patients aged 65 years and older, by 2–6% at 1 year and by 2–3% at 5 years. Interpretation Up-to-date survival trends show increases but persistent differences between countries. Trends in cancer incidence and

  2. 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

  3. 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.

  4. Clinical disease registries in acute myocardial infarction.

    PubMed

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

    2014-06-26

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

  5. 40 CFR 52.1992-1219 - [Reserved

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 40 Protection of Environment 4 2013-07-01 2013-07-01 false [Reserved] 52.1992-1219 Section 52.1992-1219 Protection of Environment ENVIRONMENTAL PROTECTION AGENCY (CONTINUED) AIR PROGRAMS (CONTINUED) APPROVAL AND PROMULGATION OF IMPLEMENTATION PLANS (CONTINUED) Oregon §§ 52.1992-1219 [Reserved] ...

  6. A brief review of vaccination coverage in immunization registries.

    PubMed

    Goldstein, Neal D; Maiese, Brett A

    2011-01-01

    Immunization registries are effective electronic tools for assessing vaccination coverage, but are only as good as the information reported to them. This review summarizes studies through August 2010 on vaccination coverage in registries and identifies key characteristics of successful registries. Based on the current state of registries, paper-based charts combined with electronic registry reporting provide the most cohesive picture of coverage. To ultimately supplant paper charts, registries must exhibit increased coverage and participation.

  7. A longitudinal study of changes in noticing and treating patients' overweight by Dutch GPs between 1997 and 2007.

    PubMed

    van Dijk, Elske; Kampen, Jarl K; Hiddink, Gerrit J; Renes, Reint Jan; van Binsbergen, Jaap J; van Woerkum, Cees M J

    2012-04-01

    One of the stakeholders in tackling the rise and health consequences of overweight and obesity is the general practice physician (GP). GPs are in a good position to inform and give nutrition guidance to overweight patients. Assessment of working mechanism of determinants of the nutrition guidance practice: noticing patients' overweight and guidance of treatment by GPs [linear analysis of structural relations (LISREL) path model] in a longitudinal study. This longitudinal study measured data in 1992, 1997 and 2007. The 1992 LISREL path model (Hiddink GJ, Hautvast J, van Woerkum CMJ, Fieren CJ, van t'Hof MA. Nutrition guidance by primary-care physicians: LISREL analysis improves understanding. Prev Med 1997; 26: 29-36.) demonstrated that 'noticing patients' overweight and guidance of treatment' was directly and indirectly influenced by predisposing factors, driving forces and perceived barriers. This article defines and discusses the path analysis of the 2007 data (compared with 1997). This analysis shows both similarity and differences in working mechanism of determinants of noticing patients' overweight and guidance of treatment between 1997 and 2007. The backbone of the mechanism with four predisposing factors is the similarity. The number of driving forces and of paths through intermediary factors to the dependent variable constitutes the difference. The backbone of the working mechanism of determinants of the nutrition guidance practice: noticing patients' overweight and guidance of treatment by GPs was similar in 2007 and 1997. The influence of GPs task perception on noticing patients' overweight and guidance of treatment considerably increased in 2007 compared to 1997. The longitudinal character of this article gives a strong practice-based evidence for weight management by GPs.

  8. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 1 2014-01-01 2014-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

  9. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 1 2012-01-01 2012-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

  10. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 1 2013-01-01 2013-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

  11. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 1 2011-01-01 2011-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

  12. Recent trends in cutaneous melanoma incidence and death rates in the United States, 1992-2006.

    PubMed

    Jemal, Ahmedin; Saraiya, Mona; Patel, Pragna; Cherala, Sai S; Barnholtz-Sloan, Jill; Kim, Julian; Wiggins, Charles L; Wingo, Phyllis A

    2011-11-01

    Increasing cutaneous melanoma incidence rates in the United States have been attributed to heightened detection of thin (≤ 1-mm) lesions. We sought to describe melanoma incidence and mortality trends in the 12 cancer registries covered by the Surveillance, Epidemiology, and End Results program and to estimate the contribution of thin lesions to melanoma mortality. We used joinpoint analysis of Surveillance, Epidemiology, and End Results incidence and mortality data from 1992 to 2006. During 1992 through 2006, melanoma incidence rates among non-Hispanic whites increased for all ages and tumor thicknesses. Death rates increased for older (>65 years) but not younger persons. Between 1998 to 1999 and 2004 to 2005, melanoma death rates associated with thin lesions increased and accounted for about 30% of the total melanoma deaths. Availability of long-term incidence data for 14% of the US population was a limitation. The continued increases in melanoma death rates for older persons and for thin lesions suggest that the increases may partly reflect increased ultraviolet radiation exposure. The substantial contribution of thin lesions to melanoma mortality underscores the importance of standard wide excision techniques and the need for molecular characterization of the lesions for aggressive forms. Copyright © 2011 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.

  13. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2014-07-01 2014-07-01 false Visual Arts Registry. 201.25... OFFICE AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

  14. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2012-07-01 2012-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

  15. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2013-07-01 2013-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

  16. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2011-07-01 2011-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

  17. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

  18. 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

  19. Considerations Before Establishing an Environmental Health Registry

    PubMed Central

    Muravov, Oleg I.; Sapp, James; Larson, Theodore C.; Pallos, L. Laszlo; Sanchez, Marchelle E.; Williamson, G. David; Horton, D. Kevin

    2015-01-01

    Public health registries can provide valuable information when health consequences of environmental exposures are uncertain or will likely take long to develop. They can also aid research on diseases that may have environmental causes that are not completely well defined. We discuss factors to consider when deciding whether to create an environmental health registry. Those factors include public health significance, purpose and outcomes, duration and scope of data collection and availability of alternative data sources, timeliness, availability of funding and administrative capabilities, and whether the establishment of a registry can adequately address specific health concerns. We also discuss difficulties, limitations, and benefits of exposure and disease registries, based on the experience of the Agency for Toxic Substances and Disease Registry. PMID:26066912

  20. 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.

  1. The National Mental Health Registry (NMHR).

    PubMed

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

  2. 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

  3. Young People in 1992.

    ERIC Educational Resources Information Center

    Balding, John

    This document contains the results of the Health Related Behaviour Questionnaire which was administered to 20,218 students between the ages of 11 and 15 years in schools in England in 1992. The preliminary sections of the report explain the questionnaire and the survey, list the Schools Health Education Unit's databanks, describe the 1992 sample,…

  4. Magnitude of discordance between registry data and death certificate when evaluating leading causes of death in dialysis patients.

    PubMed

    Lafrance, Jean-Philippe; Rahme, Elham; Iqbal, Sameena; Leblanc, Martine; Pichette, Vincent; Elftouh, Naoual; Vallée, Michel

    2013-03-27

    Discordance between dialysis registry and death certificate reported death has been demonstrated. Since cause of death is measured using registry data in dialysis patients and death certificate data in the general population, comparisons of cause of death proportions between dialysis patients and the general population may be biased. Our aim was to compare the proportion of deaths attributed to cardiovascular disease (CVD), malignancy, and infections between patients receiving dialysis and the general population using death certificates for both, and to quantify the magnitude of discrepancy between registry and death certificate estimates in dialysis patients. A retrospective cohort study of 5858 patients initiating maintenance dialysis between 2001 and 2007 was conducted. Cause of death was obtained from both registry and death certificate data for dialysis patients, and from death certificate data for the general population. Compared to the general population, use of death certificate data in dialysis patients resulted in smaller differences in the proportion of deaths attributed to CVD or infection than that from the registry. In the general population, the proportion of deaths due to CVD is 29.3% for men and 28.2% for women, and the proportion of deaths due to infection is 3.3% for men and 3.6% for women. For men, the proportion of deaths in dialysis patients due to CVD using registry data is 41.5%, compared with a proportion of 32.1% using death certificate data. Similarly for women, the proportion of deaths due to CVD using registry data is 35.2% and that using death certificate data 24.3%. The proportion of deaths due to infection in dialysis patients follows the same pattern: for men, the proportion of deaths due to infection using registry data is 9.9% and that from death certificate data at 5.0%; while for women the proportions are 11.6% and 4.8%, respectively. While absolute cause-specific mortality rates did differ, evaluation of causes of death using

  5. The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

    PubMed

    Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

    2018-04-01

     Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

  6. 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

  7. 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

  8. Incidence of oral cavity and pharynx cancer in New Hampshire, 1990-2007.

    PubMed

    Cherala, Sai S; Kelley, Kristina

    2012-01-01

    The purpose of this study is to describe trends of the statewide cancer and treatment-related characteristics of oral cavity and pharynx (OCP) cancer and prevalence of risk factors in New Hampshire residents from 1990-2007. This is a descriptive study on oral cavity and pharynx cancer using a state cancer registry dataset for 1990- 2007. The age-adjusted rates with 95% confidence intervals for cancer incidence rates and standard proportions for stage, treatment, and risk factors were calculated. The Joinpoint regression model was used for assessing linear trends for cancer rates. The overall differences for the period under study between age, female and male rate, and stage were analyzed using the test. During 1990-2007, oral cavity and pharynx cancer incidence rates for New Hampshire residents have remained stable. The cancer incidence rates have decreased for older age groups (greater than 59) and the 50-59 age group has shown increase in incidence rate of OCP cancer since 1990. There is significant increase in the late-stage diagnoses from 1990-2007. Early detection through periodic medical and dental examinations can reduce the risk of these cancers. Public health strategies that address the gaps identified by this study can reduce OCP cancer and protect the health of the New Hampshire population.

  9. 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.

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

    PubMed

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

    2015-05-01

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

  11. Assisted reproductive technology in Japan: a summary report of 1992-2014 by the Ethics Committee, Japan Society of Obstetrics and Gynecology.

    PubMed

    Irahara, Minoru; Kuwahara, Akira; Iwasa, Takeshi; Ishikawa, Tomonori; Ishihara, Osamu; Kugu, Koji; Sawa, Rintaro; Banno, Kouji; Saito, Hidekazu

    2017-04-01

    The Japan Society of Obstetrics and Gynecology implemented a registry report system for the clinical practice of assisted reproductive technology in 1986. The aggregated results from 1992 to 2014 are reported herein. The total number of registered treatments was 393 745 cycles, of which 66 550 were pregnancy cycles and 46 008 were cycles with a live birth. Compared to the number of registered treatments in 2008, when the cycle-based registry was newly introduced, there was a 2.07-fold increase in the total number of treatments and a 2.25-fold increase in the number of cycles with a live birth. As the average age of patients who receive assisted reproductive technology has become markedly higher year by year, the most common age of those patients who received assisted reproductive technology in 2014 was 40 years. The total numbers of both assisted reproductive technology treatments and assisted reproductive technology live births are likely to be higher in the future. In addition, the trend toward aging patients seems to be continuing into the future.

  12. ISHKS joint registry: A preliminary report.

    PubMed

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

    2013-09-01

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

  13. [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.

  14. 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.

  15. Frequent Questions about the Manifest Registry

    EPA Pesticide Factsheets

    FAQs Including Can I submit multiple form samples to the EPA Registry for approval? Must I submit a continuation sheet sample to the Manifest Registry under section 262.21(d)? Can I typeset the form after I am approved to print the manifest?

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

    PubMed Central

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

    2009-01-01

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

  17. 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).

  18. Invasive cancer incidence - Puerto Rico, 2007-2011.

    PubMed

    O'Neil, Mary Elizabeth; Henley, S Jane; Singh, Simple D; Wilson, Reda J; Ortiz-Ortiz, Karen J; Ríos, Naydi Pérez; Torres Cintrón, Carlos R; Luna, Guillermo Tortolero; Zavala Zegarra, Diego E; Ryerson, A Blythe

    2015-04-17

    Cancer is a leading cause of morbidity and death in Puerto Rico. To set a baseline for identifying new trends and patterns of cancer incidence, Puerto Rico Central Cancer Registry staff and CDC analyzed data from Puerto Rico included in U.S. Cancer Statistics (USCS) for 2007-2011, the most recent data available. This is the first report of invasive cancer incidence rates for 2007-2011 among Puerto Rican residents by sex, age, cancer site, and municipality. Cancer incidence rates in Puerto Rico were compared with those in the U.S. population for 2011. A total of 68,312 invasive cancers were diagnosed and reported in Puerto Rico during 2007-2011. The average annual incidence rate was 330 cases per 100,000 persons. The cancer sites with the highest cancer incidence rates included prostate (152), female breast (84), and colon and rectum (43). Cancer incidence rates varied by municipality, particularly for prostate, lung and bronchus, and colon and rectum cancers. In 2011, cancer incidence rates in Puerto Rico were lower for all cancer sites and lung and bronchus, but higher for prostate and thyroid cancers, compared with rates within the U.S. Identifying these variations can aid evaluation of factors associated with high incidence, such as cancer screening practices, and development of targeted cancer prevention and control efforts. Public health professionals can monitor cancer incidence trends and use these findings to evaluate the impact of prevention efforts, such as legislation prohibiting tobacco use in the workplace and public places and the Puerto Rico Cessation Quitline in decreasing lung and other tobacco-related cancers.

  19. 40 CFR 52.1992-52.2019 - [Reserved

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 40 Protection of Environment 4 2014-07-01 2014-07-01 false [Reserved] 52.1992-52.2019 Section 52.1992-52.2019 Protection of Environment ENVIRONMENTAL PROTECTION AGENCY (CONTINUED) AIR PROGRAMS (CONTINUED) APPROVAL AND PROMULGATION OF IMPLEMENTATION PLANS (CONTINUED) Oregon §§ 52.1992-52.2019 [Reserved] ...

  20. Midsouth Pulpwood Prices, 1992

    Treesearch

    Patrick E. Miller

    1994-01-01

    The average price in the Midsouth for a cord of roundwood pulpwood increased 5.1 percent from $56.39 in 1991 to $59.29 in 1992. The average delivered price for a green ton of chipped residues was $27.30, an increase of 6.1 percent. In 1992, expenditures for Midsouth pulpwood increased 14.0 percent to $2.2 million. Real prices continued to rise for both softwood and...

  1. [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.

  2. Reprint of: Client interfaces to the Virtual Observatory Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

    2015-06-01

    The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

  3. The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency.

    PubMed

    Steinhagen-Thiessen, Elisabeth; Stroes, Erik; Soran, Handrean; Johnson, Colin; Moulin, Philippe; Iotti, Giorgio; Zibellini, Marco; Ossenkoppele, Bas; Dippel, Michaela; Averna, Maurizio R

    2017-07-01

    A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera ® ) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in 2014 as part of its Risk Management Plan. The aim of this publication is to introduce the GENIALL Registry within a structured literature review of registries in rare genetic lipid disorders. A total of 11 relevant initiatives/registries were identified (homozygous Familial Hypercholesterolemia (hoFH) [n = 5]; LPLD [n = 1]; Lysosomal Acid Lipase Deficiency [LALD, n = 1], detection of mutations in genetic lipid disorders [n = 4]). Besides one product registry in hoFH and the LALD registry, all other initiatives are local or country-specific. GENIALL is the first global prospective registry in LPLD that will collect physician and patient generated data on the natural course of LPLD, as well as long-term outcomes of gene therapy. There is a limited number of international initiatives focusing on the natural course of specific rare genetic lipid disorders. The GENIALL LPLD Registry could be the first step towards a future broader global initiative that collects data related to familial chylomicronemia syndrome and their underlying genetic causes. Copyright © 2016. Published by Elsevier B.V.

  4. 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...

  5. 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...

  6. 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...

  7. 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...

  8. 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...

  9. Socio-Pedagogical Challenges Facing Orphaned and Vulnerable Children in the Aftermath of the 2007-2008 Election Violence in Nakuru County, Kenya

    ERIC Educational Resources Information Center

    Majanga, Eunice; Mukonyi, Phillip; Vundi, Silvia

    2015-01-01

    The conflict situations that have afflicted parts of Kenya every five years, in the wake of general elections, since 1992 were most prominent after the disputed presidential elections of 2007. The magnitude of the clashes, loss of life, destruction of property and internal displacement of people were hitherto unwitnessed. The situation of Orphans…

  10. 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.

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

    PubMed

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

    2006-04-01

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

  12. Vascular surgical data registries for small computers.

    PubMed

    Kaufman, J L; Rosenberg, N

    1984-08-01

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

  13. 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 ...

  14. Embolic strokes of undetermined source in the Athens stroke registry: a descriptive analysis.

    PubMed

    Ntaios, George; Papavasileiou, Vasileios; Milionis, Haralambos; Makaritsis, Konstantinos; Manios, Efstathios; Spengos, Konstantinos; Michel, Patrik; Vemmos, Konstantinos

    2015-01-01

    A new clinical construct termed embolic stroke of undetermined source (ESUS) was recently introduced, but no such population has been described yet. Our aim is to provide a detailed descriptive analysis of an ESUS population derived from a large prospective ischemic stroke registry using the proposed diagnostic criteria. The criteria proposed by the Cryptogenic Stroke/ESUS International Working Group were applied to the Athens Stroke Registry to identify all ESUS patients. ESUS was defined as a radiologically confirmed nonlacunar brain infarct in the absence of (a) extracranial or intracranial atherosclerosis causing ≥50% luminal stenosis in arteries supplying the ischemic area, (b) major-risk cardioembolic source, and (c) any other specific cause of stroke. Among 2735 patients admitted between 1992 and 2011, 275 (10.0%) were classified as ESUS. In the majority of ESUS (74.2%), symptoms were maximal at onset. ESUS were of moderate severity (median National Institute Health Stroke Scale score, 5). The most prevalent risk factor was arterial hypertension (64.7%), and 50.9% of patients were dyslipidemic. Among potential causes of the ESUS, covert atrial fibrillation (AF) was the most prevalent: in 30 (10.9%) patients, AF was diagnosed during hospitalization for stroke recurrence, whereas in 50 (18.2%) patients AF was detected after repeated ECG monitoring during follow-up. Also, covert AF was strongly suggested in 38 patients (13.8%) but never recorded. About 10% of patients with first-ever ischemic stroke met criteria for ESUS; covert paroxysmal AF seems to be a frequent cause of ESUS. © 2014 American Heart Association, Inc.

  15. A description and comparison of selected forest carbon registries: a guide for States considering the development of a forest carbon registry

    Treesearch

    Jessica Call; Jennifer Hayes

    2007-01-01

    There is increasing interest in tools for measuring and reducing emissions of carbon dioxide, a major greenhouse gas. Two tools that have been receiving a lot of attention include carbon markets and carbon registries. Carbon registries are established to record and track net carbon emission levels over time. These registries provide quantifiable and verifiable carbon...

  16. 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.

  17. Occupational amputations in Illinois 2000-2007: BLS vs. data linkage of trauma registry, hospital discharge, workers compensation databases and OSHA citations.

    PubMed

    Friedman, Lee; Krupczak, Colin; Brandt-Rauf, Sherry; Forst, Linda

    2013-05-01

    Workplace amputation is a widespread, disabling, costly, and preventable public health problem. Thousands of occupational amputations occur each year, clustering in particular economic sectors, workplaces, and demographic groups such as young workers, Hispanics, and immigrants. To identify and describe work related amputations amongst Illinois residents that occur within Illinois as reported in three legally mandated State databases; to compare these cases with those identified through the BLS-Survey of Occupational Illnesses and Injuries (SOII); and to determine the extent of direct intervention by the Occupational Safety and Health Administration (OSHA) for these injuries in the State. We linked cases across three databases in Illinois - trauma registry, hospital discharge, and workers compensation claims. We describe amputation injuries in Illinois between 2000 and 2007, compare them to the BLS-SOII, and determine OSHA investigations of the companies where amputations occurred. There were 3984 amputations identified, 80% fingertips, in the Illinois databases compared to an estimated 3637, 94% fingertips, from BLS-SOII. Though the overall agreement is close, there were wide fluctuations (over- and under-estimations) in individual years between counts in the linked dataset and federal survey estimates. No OSHA inspections occurred for these injuries. Increased detection of workplace amputations is essential to targeting interventions and to evaluating program effectiveness. There should be mandatory reporting of all amputation injuries by employers and insurance companies within 24h of the event, and every injury should be investigated by OSHA. Health care providers should recognise amputation as a public health emergency and should be compelled to report. There should be a more comprehensive occupational injury surveillance system in the US that enhances the BLS-SOII through linkage with state databases. Addition of industry, occupation, and work

  18. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... information about the type and size of vessel that the NOAA ENC data has been provided for as well as an... 15 Commerce and Foreign Trade 3 2011-01-01 2011-01-01 false Registry of data users. 995.21 Section... § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

  19. 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 ...

  20. 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

  1. 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.

  2. Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model.

    PubMed

    Bellgard, Matthew I; Napier, Kathryn R; Bittles, Alan H; Szer, Jeffrey; Fletcher, Sue; Zeps, Nikolajs; Hunter, Adam A; Goldblatt, Jack

    2018-02-01

    Orphan drug clinical trials often are adversely affected by a lack of high quality treatment efficacy data that can be reliably compared across large patient cohorts derived from multiple governmental and country jurisdictions. It is critical that these patient data be captured with limited corporate involvement. For some time, there have been calls to develop collaborative, non-proprietary, patient-centric registries for post-market surveillance of aspects related to orphan drug efficacy. There is an urgent need for the development and sustainable deployment of these 'independent' registries that can capture comprehensive clinical, genetic and therapeutic information on patients with rare diseases. We therefore extended an open-source registry platform, the Rare Disease Registry Framework (RDRF) to establish an Independent Rare Disease Registry (IRDR). We engaged with an established rare disease community for Gaucher disease to determine system requirements, methods of data capture, consent, and reporting. A non-proprietary IRDR model is presented that can serve as autonomous data repository, but more importantly ensures that the relevant data can be made available to appropriate stakeholders in a secure, timely and efficient manner to improve clinical decision-making and the lives of those with a rare disease. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

  3. The cost of doing business: cost structure of electronic immunization registries.

    PubMed

    Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

    2002-10-01

    To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment.

  4. 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.

  5. 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.

  6. 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.

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

    PubMed

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

    2018-02-01

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

  8. A UK medical devices regulator's perspective on registries.

    PubMed

    Wilkinson, John; Crosbie, Andy

    2016-04-01

    Registries are powerful tools to support manufacturers in the fulfilment of their obligations to perform post-market surveillance and post-market clinical follow-up of implantable medical devices. They are also a valuable resource for regulators in support of regulatory action as well as in providing information around the safety of new and innovative technologies. Registries can provide valuable information on the relative performance of both generic types and manufacturer's individual products and they complement other sources of information about device performance such as post-market clinical studies and adverse incident reporting. This paper describes the experience of the UK medical device regulator - the Medicines and Healthcare Products Regulatory Agency (MHRA) - of working with registries to monitor the safety and performance of medical devices. Based upon this experience, the authors identify a number of attributes for a registry which they consider to be key if the registry is to contribute effectively to the work of regulators on patient safety monitoring and medical device regulation.

  9. 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.

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

    PubMed

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

    2015-02-01

    To analyze data recorded in the EAHFE registry (Epidemiology of Acute Heart Failure in Emergency Departments), which collects information on the clinical characteristics and laboratory findings of patients with acute heart failure (AHF) treated in 29 Spanish hospital emergency departments (EDs) as well as therapies used and clinical course. We analyzed changes in management observed over time and compared the results with data recorded in other AHF registries. Prospective multicenter cohort study of consecutive patients treated in 3 different years: 2007, 2009, and 2011. We collected demographic, clinical, and laboratory data; medications taken prior to the emergency and in the ED; and outcome variables (in-hospital and 30-day and 1-year mortality rates, readmissions within 30 days). Changes in therapy and course in the 3 years were analyzed. The literature was reviewed to find other national and international AHF registries. A total of 5845 patients were included (2007, 948; 2009, 1483; 2011, 3414). The mean age was 79 years and 56% were women. The AHF episode registered was the first experienced by 34.6% of the patients. Comorbidity was high: 82% had hypertension, 42.3% had diabetes mellitus, and 47.7% had atrial fibrillation. Severe or total functional dependence was observed in 21.9%, and 57.3% had systolic dysfunction (left ventricular ejection fraction, 38.3%). The main treatments administered consisted in diuretics (96.8%), endovenous nitroglycerine (20.7%), noninvasive ventilation (6.4%), and inotropic agents or vasopressors (3.6%). The glomerular filtration rate was low in 57%. Troponin and natriuretic peptide levels were measured in the EDs in 49.1% and 42.4% of the cases, respectively. Patients presented as normotensive in 66.4% of the cases, hypertensive in 23.5%, and hypotensive in 4.6% (0.7% in shock); 76.1% were admitted (1.9% to the ICU). The median hospital stay was 7 days and 23.9% were discharged from the ED. In-hospital mortality was 7.6%; 30

  11. 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.

  12. Human plague in 1992.

    PubMed

    1994-01-14

    Trends in the incidence of human plague cases reported to the World Health Organization were provided for 1992 and between 1978 and 1992 by country. Not all countries report or record plague. In 1992, there were 9 countries reporting a total of 1582 cases, of which 138 were deaths. In 1991, there were 10 countries reporting a total of 1966 cases, of which 133 were deaths. The case fatality rate in 1992 was 8.7% and 10.4% averaged over the previous 10 years. Between 1978 and 1992, 14,856 cases of plague were reported, of which 1451 cases were fatal. Countries reporting totaled 21, but only 6 reported almost annually: Brazil, Madagascar, Myanmar, the United Republic of Tanzania, the USA, and Viet Nam. Peak numbers of cases occurred in 1984, 1988, and 1990-92. Africa totaled 61% of cases and 77% of deaths. In 1992, Madagascar and Zaire reported 412 cases, of which 102 were fatal. Plague in Madagascar was concentrated in the provinces of Antananarivo, Fianarantsoa, Mahajanga, and Toamasina. Most of the cases in 1991 were from Antananarivo Province (61 cases and 19 deaths) and Fianarantsoa Province (99 case and 5 deaths). Plague peaks occurred in January through May and November and December. Zaire deaths were concentrated in Upper Zaire in 5 rural Heath Zones: Logo (125 cases and 47 deaths), Rethy (54 cases and 4 deaths), Nyarembe (22 cases and 9 deaths), Rimba (11 cases and 4 deaths), and Bunia (2 cases and 1 death). Almost 60% of all deaths occurred during May to July and included bubonic, septicemic, and pulmonary plague. American plague cases totaled 158 and 6 deaths (Peru, Brazil, and the USA). Asia reported 1012 cases and 26 cases (China, Mongolia, Myanmar, and Viet Nam). In the USA, the 13 cases were recorded as 1 each in Frenso County, California; Owyhee County, Idaho; Douglas County, Nevada; Utah County, Utah; and Sheridan County, Wyoming; 2 in New Mexico (Santa Fe, and Albuquerque and San Miguel Counties); and Arizona (3 in Apache County and 1 in Pima County

  13. 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.

  14. United States Transuranium and Uranium Registries

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

    Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

    1991-06-01

    This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjectsmore » reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs.« less

  15. The Cost of Doing Business: Cost Structure of Electronic Immunization Registries

    PubMed Central

    Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

    2002-01-01

    Objective To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Data Sources/Study Setting Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. Study Design A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data Collection/Extraction Methods Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. Principal Findings The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. Conclusions There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment. PMID:12479497

  16. 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

  17. 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

  18. Mapping Global Urban Dynamics from Nighttime Lights - 1992 to 2012

    NASA Astrophysics Data System (ADS)

    Xie, Yanhua

    Accurate, up-to-date, and consistent information of urban extent is indispensable for numerous applications central to urban planning, ecosystem management, and environmental assessment and monitoring. However, current large-scale urban extent products are not uniform with respect to urban definition, spatial resolution, thematic representation, and temporal frequency. To fill this gap, this study proposed a method to update and backdate global urban extent from currently available urban maps by using nighttime light (NTL) as the main indicator. The method followed three steps: (1) exploring the spatiotemporal variation of NTL thresholds for mapping urban dynamics from NTL time series and developing an object-based thresholding method (i.e., NTL-OUT method, Xie & Weng, 2016b); (2) spatiotemporally enhancing time-series Defense Meteorological Satellite Program/Operational Linescan System (DMSP/OLS) NTL data for detecting broad-scale urban changes (Xie & Weng, 2017); and (3) detecting global urban dynamics during the period between 1992 and 2012 (i.e., 1992, 1997, 2002, 2007, and 2012) from enhanced OLS NTL time series by using the NTL-OUT method. The results show that global urban extent almost doubled during the period from 1992 to 2012, increasing from 0.52 million to 0.98 million km 2, which accounts for 0.39% and 0.72% of the total global land area, respectively. Regionally, the urbanization level varies by continent, with Europe being the most urbanized, followed by North America, Asia, South America, Africa, and Australia-Oceania. In 1992, the urban extent varied from only 0.1% of total continental land area in Australia-Oceania and Africa to 1.18% in Europe. While the proportion of urban extent in North America increased slightly from 1992 to 2002 (i.e., 0.07%), urban extent increased 0.1% for both Asia and South America. In 2012, over 0.7% of the total land was covered by the human built environment, with 0.2% in Africa and Australia-Oceania and around 0

  19. 14 CFR 47.19 - FAA Aircraft Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other...

  20. 38 CFR 1.992 - Procedures for salary offset.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 38 Pensions, Bonuses, and Veterans' Relief 1 2010-07-01 2010-07-01 false Procedures for salary offset. 1.992 Section 1.992 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF VETERANS AFFAIRS GENERAL PROVISIONS Salary Offset Provisions § 1.992 Procedures for salary offset. (a) Types of collection...

  1. Decision counseling and participation in a pancreas cancer registry.

    PubMed

    Myers, Ronald; Lavu, Harish; Keith, Scott W; Kelly, Heidi; O'Rourke, Nadine; Cocroft, James; Quinn, Anna; Potluri, Vishnu; Yeo, Charles J

    2014-01-01

    Cancer registries play a vital role in research, as they provide important data that can be used to assess disease etiology and risk. Specialty registries can help to address the need for information on defined cancer types. However, achieving high rates of participation in such registries is problematic.We studied the impact of decision support on patient participation in a hospital-based pancreas cancer registry, the Jefferson Pancreas Tumor Registry (JPTR). In this study, we assembled a nonrandomized cohort of 40 patients, of whom 20 were exposed to the intervention and 20 were exposed to routine recruiting methods. Patients in the control group were invited to join the JPTR; while those in the intervention group were also invited to join the JPTR, and received decision support related to participation. Registry participation was assessed at 90 days. At baseline, patient gender, race, and stage of pancreatic cancer did not vary significantly between study groups. Overall, participation in the intervention group was significantly higher (P = 0.01) than in the control group (55% and 10%, respectively). In the intervention group, altruism was the major factor motivating patient participation, while patient concerns related to treatment recovery, registration time and complexity, and the confidentiality of registry data discouraged participation.

  2. 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

  3. The GEOSS Component and Service Registry

    NASA Astrophysics Data System (ADS)

    Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.

    2011-12-01

    Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service

  4. [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.

  5. 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

  6. Integrating data from multiple sources for data completeness in a web-based registry for pediatric renal transplantation--the CERTAIN Registry.

    PubMed

    Köster, Lennart; Krupka, Kai; Höcker, Britta; Rahmel, Axel; Samuel, Undine; Zanen, Wouter; Opelz, Gerhard; Süsal, Caner; Döhler, Bernd; Plotnicki, Lukasz; Kohl, Christian D; Knaup, Petra; Tönshoff, Burkhard

    2015-01-01

    Patient registries are a useful tool to measure outcomes and compare the effectiveness of therapies in a specific patient population. High data quality and completeness are therefore advantageous for registry analysis. Data integration from multiple sources may increase completeness of the data. The pediatric renal transplantation registry CERTAIN identified Eurotransplant (ET) and the Collaborative Transplant Study (CTS) as possible partners for data exchange. Import and export interfaces with CTS and ET were implemented. All parties reached their projected goals and benefit from the exchange.

  7. Differences in the Korea Acute Myocardial Infarction Registry Compared with Western Registries

    PubMed Central

    2017-01-01

    The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglyceride and lower high-density lipoprotein cholesterol levels. Percutaneous coronary intervention (PCI) rates were high for both STEMI and non-ST-elevation myocardial infarction (NSTEMI) with higher use of drug-eluting stents (DESs). DES were effective and safe without increased risk of stent thrombosis in Korean AMI patients. Triple antiplatelet therapy, consisting of aspirin, clopidogrel, and cilostazol, was effective in preventing adverse clinical outcomes after PCI. Statin therapy was effective in Korean AMI patients, including those with very low levels of low-density lipoprotein cholesterol and those with cardiogenic shock. The KAMIR score had a greater predictive value than Thrombolysis in Myocardial Infarction (TIMI) and Global Registry of Acute Coronary Events (GRACE) scores for long-term mortality in AMI patients. Based on these results, the KAMIR will be instrumental for establishing new therapeutic strategies and effective methods for secondary prevention of AMI and guidelines for Asian patients. PMID:29035427

  8. The New ADL Registry. ADL Registry Web Portal Changes

    DTIC Science & Technology

    2009-08-19

    Questions or Comments? Jason Haag Learning Technology Analyst jason.haag.ctr@adlnet.gov +1.850.471.1300 ...PERFORMING ORGANIZATION NAME(S) AND ADDRESS(ES) Advanced Decision Learning (ADL),Joint ADL Co-Lab,13501 Ingenuity Drive Suite 248,Orlando,FL,32826 8... Technologies /adlr/  News and Announcements  Frequently Asked Questions (FAQ)  Documentation  Events and Event Registration 4 ADL Registry Functional

  9. Status of the flora and fauna on the Nevada Test Site, 1992. Results of continuing basic environmental monitoring, January through December 1992

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

    Hunter, R.B.

    This report documents changes in the populations of plants and animals on the Nevada Test Site (NTS) for calendar year 1992. It is part of a Department of Energy (DOE) program (Basic Environmental Compliance and Monitoring Program -- BECAMP) that also includes monitoring DOE compliance with the Endangered Species Act, the Historic Preservation Act, and the American Indian Freedom of Religion Act. Ecological studies were to comply with the National Environmental Policy Act and DOE Order 5400.1, ``General Environmental Protection Program.`` These studies focused on the following: status of ephemeral plants on the Nevada Test Site, 1992; status of reptilemore » and amphibian populations on the Nevada Test Site, 1992; trends in small mammal populations on the Nevada Test Site, 1992; status of large mammals and birds at Nevada Test Site, 1992; and status of perennial plants on the Nevada Test Site, 1992.« less

  10. Water withdrawal and use in Maryland, 1992-93

    USGS Publications Warehouse

    Wheeler, J.C.

    1997-01-01

    During 1992, about 1,430 million gallons per day (Mgal/d) of freshwater was withdrawn from surface-water and ground-water sources in Maryland. Total freshwater withdrawals increased during 1993 to about 1,480 Mgal/d. Saline surface- water withdrawals for cooling condensers increased from about 5,350 Mgal/d during 1992 to 5,840 Mgal/d during 1993. During 1992-93, most freshwater withdrawals (about 1,180 Mgal/d during 1992 and 1,200 Mgal/d during 1993) were from surface-water sources. Nearly 70 percent of the fresh surface water was withdrawn in the Potomac River drainage basin. Most ground water (about 178 Mgal/d in 1992 and 194 Mgal/d in 1993) was withdrawn in the Upper Chesapeake drainage basin.The Potomac Group aquifers provided most of the ground water (about 61 Mgal/d during 1992 and 64 Mgal/d during 1993). Ten water-use categoriesrepresent the major demands on the surface-water and ground-water resources of the State: Public supply, domestic, commercial, industrial, mining, thermoelectric power, hydroelectric power, livestock, irrigation, and aquaculture. Largest withdrawals were for public supply (790 Mgal/d during 1992 and 812 Mgal/d during 1993), and the water was used by residences, commercial establishments, and industries. Baltimore City received the largest public-supply deliveries (about 126 Mgal/d during1992 and 129 Mgal/d during 1993). Freshwater withdrawals for self-supplied domestic, commercial, mining, aquaculture, and irrigation uses increased during the period, whereas withdrawals for industrial and thermoelectric power uses decreased.

  11. Overview and Assessment of Antarctic Ice-Sheet Mass Balance Estimates: 1992-2009

    NASA Technical Reports Server (NTRS)

    Zwally, H. Jay; Giovinetto, Mario B.

    2011-01-01

    Mass balance estimates for the Antarctic Ice Sheet (AIS) in the 2007 report by the Intergovernmental Panel on Climate Change and in more recent reports lie between approximately ?50 to -250 Gt/year for 1992 to 2009. The 300 Gt/year range is approximately 15% of the annual mass input and 0.8 mm/year Sea Level Equivalent (SLE). Two estimates from radar altimeter measurements of elevation change by European Remote-sensing Satellites (ERS) (?28 and -31 Gt/year) lie in the upper part, whereas estimates from the Input-minus-Output Method (IOM) and the Gravity Recovery and Climate Experiment (GRACE) lie in the lower part (-40 to -246 Gt/year). We compare the various estimates, discuss the methodology used, and critically assess the results. We also modify the IOM estimate using (1) an alternate extrapolation to estimate the discharge from the non-observed 15% of the periphery, and (2) substitution of input from a field data compilation for input from an atmospheric model in 6% of area. The modified IOM estimate reduces the loss from 136 Gt/year to 13 Gt/year. Two ERS-based estimates, the modified IOM, and a GRACE-based estimate for observations within 1992 2005 lie in a narrowed range of ?27 to -40 Gt/year, which is about 3% of the annual mass input and only 0.2 mm/year SLE. Our preferred estimate for 1992 2001 is -47 Gt/year for West Antarctica, ?16 Gt/year for East Antarctica, and -31 Gt/year overall (?0.1 mm/year SLE), not including part of the Antarctic Peninsula (1.07% of the AIS area). Although recent reports of large and increasing rates of mass loss with time from GRACE-based studies cite agreement with IOM results, our evaluation does not support that conclusion

  12. 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.

  13. 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

  14. Airborne Hazards and Open Burn Pit Registry

    MedlinePlus

    ... Burn Pit Registry requires a common web browser technology to guide you through the registry questionnaire. You may try a different browser, or you may try from a different computer. You may also see this problem if you are in a high security environment where this is disabled by a network policy. ...

  15. Presenting an evaluation model of the trauma registry software.

    PubMed

    Asadi, Farkhondeh; Paydar, Somayeh

    2018-04-01

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

  16. Rationale and design of a large registry on renal denervation: the Global SYMPLICITY registry.

    PubMed

    Böhm, Michael; Mahfoud, Felix; Ukena, Christian; Bauer, Axel; Fleck, Eckart; Hoppe, Uta C; Kintscher, Ulrich; Narkiewicz, Krzysztof; Negoita, Manuela; Ruilope, Luis; Rump, L Christian; Schlaich, Markus; Schmieder, Roland; Sievert, Horst; Weil, Joachim; Williams, Bryan; Zeymer, Uwe; Mancia, Giuseppe

    2013-08-22

    Hypertension is a global healthcare concern associated with a wide range of comorbidities. The recognition that elevated sympathetic drive plays an important role in the pathogenesis of hypertension led to the use of renal artery denervation to interrupt the efferent and afferent sympathetic nerves between the brain and kidneys to lower blood pressure. Clinical trials of the Symplicity™ renal denervation system have demonstrated that radiofrequency ablation of renal artery nerves is safe and significantly lowers blood pressure in patients with severe resistant (systolic BP >160 mmHg) hypertension. Smaller ancillary studies in hypertensive patients suggest a benefit from renal denervation in a variety of conditions such as chronic kidney disease, glucose intolerance, sleep apnoea and heart failure. The Global SYMPLICITY registry, which incorporates the GREAT SYMPLICITY registry initiated in Germany, is being conducted worldwide to evaluate the safety and efficacy of treatment with the Symplicity renal denervation system in real-world uncontrolled hypertensive patients, looking first at subjects with severe resistant hypertension to confirm the results of prior clinical trials, but then also subjects with a wider range of baseline blood pressure and coexisting comorbidities. The rationale, design and first baseline data from the Global SYMPLICITY registry are presented.

  17. A Suggested Model for Building Robust Biomedical Implants Registries.

    PubMed

    Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa

    2017-01-01

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

  18. 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

  19. 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.

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

    PubMed

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

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

  1. Arthroplasty Implant Registries Over the Past Five Decades: Development, Current, and Future Impact.

    PubMed

    Malchau, Henrik; Garellick, Göran; Berry, Daniel; Harris, William H; Robertson, Otto; Kärrlholm, Johan; Lewallen, David; Bragdon, Charles R; Lidgren, Lars; Herberts, Peter

    2018-04-16

    Local, regional and national registries have played an important role the development of hip and knee arthroplasty and the treatment of patients with various maladies of these joints. Four arthroplasty registries stand out as leading forces behind the drive to popularize the use of registries and pursue the concept of evidence based medicine. The Mayo registry, started by Mark Coventry, is recognized as the oldest continuing registry for arthroplasty. The Harris Registry at Massachusetts General Hospital, along with the Mayo Registry, has greatly contributed to the advancement of arthroplasty surgery and have served an important role of identifying poorly performing implants and techniques in the United States. The Swedish Knee Arthroplasty Registry is the oldest national registry dedicated to joint arthroplasty and along with the Swedish Hip Arthroplasty Registry have established the infrastructure, analysis and reporting mechanisms and leadership that has enabled other countries to subsequently develop national registries around the world. As more countries have adopted the concept of national registries, a new area of research is possible by pooling the resources of large registries as is now occurring with the Nordic countries. Several international organizations have been formed to promote future collaboration and develop international standards. The process of globalization of registries is a result of continued efforts over the past 50 years in improving and disseminating the knowledge gained from the early registries. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  2. 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.

  3. The Savant Syndrome Registry: A Preliminary Report.

    PubMed

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

  4. 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.

  5. REAC/TS Radiation Accident Registry: An Overview

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

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

    2012-12-12

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

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

    PubMed

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

    2015-11-01

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

  7. Data that empower: The success and promise of CF patient registries.

    PubMed

    Fink, Aliza K; Loeffler, Deena R; Marshall, Bruce C; Goss, Christopher H; Morgan, Wayne J

    2017-11-01

    In this article, we describe existing CF registries with a focus on US registry data collected through the CF Foundation Patient Registry (CFFPR) and the Epidemiologic Study of CF (ESCF); highlight what registries have taught us regarding epidemiology of CF; showcase the impact of registries on research and clinical care; and discuss future directions. This manuscript complements the plenary address given by Dr Wayne Morgan at the 2016 North American CF Conference by summarizing the key points from the presentation and providing additional detail and information. © 2017 Wiley Periodicals, Inc.

  8. Kansas Chapter 1 1992-1993 Evaluation.

    ERIC Educational Resources Information Center

    Kansas State Board of Education, Topeka.

    The 1992-93 analysis of the Kansas Chapter 1 evaluation results is described. In the 1992-93 school year, 100 percent (304) of Kansas districts participated in the Chapter 1 program. Approximately 7 percent of the student population participated in Chapter 1 programs, and 82 percent were in grades 1 through 6. A majority of these students were…

  9. 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.

  10. 20 CFR 404.1048 - Contribution and benefit base after 1992.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... FR 20075, Mar. 27, 1980, as amended at 55 FR 7309, Mar. 1, 1990; 57 FR 1382, Jan. 14, 1992] ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Contribution and benefit base after 1992. 404... Contribution and benefit base after 1992. (a) General. The contribution and benefit base after 1992 is figured...

  11. 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

  12. Registry of the Japanese Society of Lung and Heart-Lung Transplantation: the official Japanese lung transplantation report 2008.

    PubMed

    Shiraishi, Takeshi; Okada, Yoshinori; Sekine, Yasuo; Chida, Masayuki; Bando, Toru; Minami, Masato; Oto, Takahiro; Nagayasu, Takeshi; Date, Hiroshi; Kondo, Takashi

    2009-08-01

    The year 2008 marked the 10th anniversary of the Japanese lung transplantation program started in accordance with the Japanese Organ Transplant Law, which took effect in 1997. A total of 105 lung transplantations, including 39 deceased-donor transplants and 66 living-related transplants, had been performed as of the end of 2007. This article is the 2008 official report of the Japanese Society of Lung and Heart-Lung Transplantation. It summarizes the data for clinical lung transplantation during the period 1998-2007 and discusses the current status of Japanese lung transplantation. The overall 5-year survival rate was 67.0%: including 53.4% and 74.6% for deceased-donor lung transplantation and living-donor lobar lung transplantation groups, respectively. The total operation-related and 1-month mortality rates after surgery were 3.8% and 10.4%, respectively. These data are better, or at least acceptable, in comparison with the international registry data.

  13. 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.

  14. Motor neuron disease mortality rates in New Zealand 1992-2013.

    PubMed

    Cao, Maize C; Chancellor, Andrew; Charleston, Alison; Dragunow, Mike; Scotter, Emma L

    2018-05-01

    We determined the mortality rates of motor neuron disease (MND) in New Zealand over 22 years from 1992 to 2013. Previous studies have found an unusually high and/or increasing incidence of MND in certain regions of New Zealand; however, no studies have examined MND rates nationwide to corroborate this. Death certificate data coded G12.2 by International Classification of Diseases (ICD)-10 coding, or 335.2 by ICD-9 coding were obtained. These codes specify amyotrophic lateral sclerosis, progressive bulbar palsy, or other motor neuron diseases as the underlying cause of death. Mortality rates for MND deaths in New Zealand were age-standardized to the European Standard Population and compared with rates from international studies that also examined death certificate data and were age-standardized to the same standard population. The age-standardized mortality from MND in New Zealand was 2.3 per 100,000 per year from 1992-2007 and 2.8 per 100,000 per year from 2008-2013. These rates were 3.3 and 4.0 per 100,000 per year, respectively, for the population 20 years and older. The increase in rate between these two time periods was likely due to changes in MND death coding from 2008. Contrary to a previous regional study of MND incidence, nationwide mortality rates did not increase steadily over this time period once aging was accounted for. However, New Zealand MND mortality rate was higher than comparable studies we examined internationally (mean 1.67 per 100,000 per year), suggesting that further analysis of MND burden in New Zealand is warranted.

  15. Standardization of Questions in Rare Disease Registries: The PRISM Library Project.

    PubMed

    Richesson, Rachel Lynn; Shereff, Denise; Andrews, James Everett

    2012-10-10

    Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers. This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized questions covering a broad spectrum of rare diseases that can be used to support the development of new registries, including Internet-based registries. A convenience sample of questions was identified from well-established (>5 years) natural history studies in various diseases and from several existing registries. Face validity of the questions was determined by review by many experts (both terminology experts at the College of American Pathologists (CAP) and research and informatics experts at the University of South Florida (USF)) for commonality, clarity, and organization. Questions were re-worded slightly, as needed, to make the full semantics of the question clear and to make the questions generalizable to multiple diseases where possible. Questions were indexed with metadata (structured and descriptive information) using a standard metadata framework to record such information as context, format, question asker and responder, and data standards information. At present, PRISM contains over 2,200 questions, with content of PRISM relevant to virtually all rare diseases. While the inclusion of disease-specific questions for thousands of rare disease organizations seeking to develop registries would present a challenge for traditional standards development organizations, the PRISM library could

  16. Standardization of Questions in Rare Disease Registries: The PRISM Library Project

    PubMed Central

    Shereff, Denise; Andrews, James Everett

    2012-01-01

    Background Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers. Objective This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized questions covering a broad spectrum of rare diseases that can be used to support the development of new registries, including Internet-based registries. Methods A convenience sample of questions was identified from well-established (>5 years) natural history studies in various diseases and from several existing registries. Face validity of the questions was determined by review by many experts (both terminology experts at the College of American Pathologists (CAP) and research and informatics experts at the University of South Florida (USF)) for commonality, clarity, and organization. Questions were re-worded slightly, as needed, to make the full semantics of the question clear and to make the questions generalizable to multiple diseases where possible. Questions were indexed with metadata (structured and descriptive information) using a standard metadata framework to record such information as context, format, question asker and responder, and data standards information. Results At present, PRISM contains over 2,200 questions, with content of PRISM relevant to virtually all rare diseases. While the inclusion of disease-specific questions for thousands of rare disease organizations seeking to develop registries would present a challenge for traditional standards development

  17. Chronic thromboembolic pulmonary hypertension (CTEPH): results from an international prospective registry.

    PubMed

    Pepke-Zaba, Joanna; Delcroix, Marion; Lang, Irene; Mayer, Eckhard; Jansa, Pavel; Ambroz, David; Treacy, Carmen; D'Armini, Andrea M; Morsolini, Marco; Snijder, Repke; Bresser, Paul; Torbicki, Adam; Kristensen, Bent; Lewczuk, Jerzy; Simkova, Iveta; Barberà, Joan A; de Perrot, Marc; Hoeper, Marius M; Gaine, Sean; Speich, Rudolf; Gomez-Sanchez, Miguel A; Kovacs, Gabor; Hamid, Abdul Monem; Jaïs, Xavier; Simonneau, Gérald

    2011-11-01

    Chronic thromboembolic pulmonary hypertension (CTEPH) is often a sequel of venous thromboembolism with fatal natural history; however, many cases can be cured by pulmonary endarterectomy. The clinical characteristics and current management of patients enrolled in an international CTEPH registry was investigated. The international registry included 679 newly diagnosed (≤6 months) consecutive patients with CTEPH, from February 2007 until January 2009. Diagnosis was confirmed by right heart catheterization, ventilation-perfusion lung scintigraphy, computerized tomography, and/or pulmonary angiography. At diagnosis, a median of 14.1 months had passed since first symptoms; 427 patients (62.9%) were considered operable, 247 (36.4%) nonoperable, and 5 (0.7%) had no operability data; 386 patients (56.8%, ranging from 12.0%- 60.9% across countries) underwent surgery. Operable patients did not differ from nonoperable patients relative to symptoms, New York Heart Association class, and hemodynamics. A history of acute pulmonary embolism was reported for 74.8% of patients (77.5% operable, 70.0% nonoperable). Associated conditions included thrombophilic disorder in 31.9% (37.1% operable, 23.5% nonoperable) and splenectomy in 3.4% of patients (1.9% operable, 5.7% nonoperable). At the time of CTEPH diagnosis, 37.7% of patients initiated at least 1 pulmonary arterial hypertension-targeted therapy (28.3% operable, 53.8% nonoperable). Pulmonary endarterectomy was performed with a 4.7% documented mortality rate. Despite similarities in clinical presentation, operable and nonoperable CTEPH patients may have distinct associated medical conditions. Operability rates vary considerably across countries, and a substantial number of patients (operable and nonoperable) receive off-label pulmonary arterial hypertension-targeted treatments.

  18. Few geographic and socioeconomic variations exist in primary total shoulder arthroplasty: a multi-level study of Australian registry data.

    PubMed

    Brennan-Olsen, Sharon L; Page, Richard S; Lane, Stephen E; Lorimer, Michelle; Buchbinder, Rachelle; Osborne, Richard H; Pasco, Julie A; Wluka, Anita E; Sanders, Kerrie M; Ebeling, Peter R; Graves, Stephen E

    2016-07-16

    Associations between socioeconomic position (SEP) and the uptake of primary total shoulder arthroplasty (TSA) is not well understood in the Australian population, thus potentially limiting equitable allocation of healthcare resources. We used the Australian Orthopaedic Association National Joint Replacement Registry (AOA NJRR) to examine whether geographic or socioeconomic variations exist in TSA performed for a diagnosis of osteoarthritis 2007-11 for all Australians aged ≥40 years. Primary anatomical and reverse TSA data were extracted from the AOA NJRR which captures >99 % of all TSA nationally. Residential addresses were cross-referenced to Australian Bureau of Statistics 2011 Census data to identify SEP measured at the area-level (categorised into deciles), and geographic location defined as Australian State/Territory of residence. We used a Poisson distribution for the number of TSA over the study period, and modelled the effects of age, SEP and geographic location using multilevel modelling. During 2007-11, we observed 6,123 TSA (62.2 % female). For both sexes, TSA showed a proportional increase with advancing age. TSA did not vary by SEP or geographic location, with the exception of greater TSA among men in New South Wales. Using a national registry approach we provide the first reliable picture of TSA at a national level. The uptake of TSA was equitable across SEP; however, there was some variation between the States/Territories. With an aging population, it is imperative that monitoring of major surgical procedures continues, and be focused toward determining whether TSA uptake correlates with need across different social and area-based groups.

  19. 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.

  20. 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

  1. Development of an International Prostate Cancer Outcomes Registry.

    PubMed

    Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J

    2016-04-01

    To establish a Prostate Cancer Outcomes Registry-Australia and New Zealand (PCOR-ANZ) for monitoring outcomes of prostate cancer treatment and care, in a cost-effective manner. Stakeholders were recruited based on their interest, importance in achieving the monitoring and reporting of clinical practice and patient outcomes, and in amalgamation of existing registries. Each participating jurisdiction is responsible for local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ. To establish each local registry, hospitals and clinicians within a jurisdiction were approached to voluntarily contribute to the registry following relevant ethical approval. Patient contact occurs following notification of prostate cancer through a hospital or pathology report, or from a cancer registry. Patient registration is based on an opt-out model. The PCOR-ANZ is a secure web-based registry adhering to ISO 27001 standards. Based on a standardised minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient reported quality of life, are collected. Eight of nine jurisdictions have agreed to contribute to the PCOR-ANZ. Each jurisdiction has commenced implementation of necessary infrastructure to support rapid rollout. PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. PCOR-ANZ will provide a useful resource of risk-adjusted evidence-based data to clinicians, hospitals, and decision makers on prostate cancer clinical practice. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

  2. 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.

  3. Strengthening Renal Registries and ESRD Research in Africa.

    PubMed

    Davids, M Razeen; Caskey, Fergus J; Young, Taryn; Balbir Singh, Gillian K

    2017-05-01

    In Africa, the combination of noncommunicable diseases, infectious diseases, exposure to environmental toxins, and acute kidney injury related to trauma and childbirth are driving an epidemic of chronic kidney disease and end-stage renal disease (ESRD). Good registry data can inform the planning of renal services and can be used to argue for better resource allocation, audit the delivery and quality of care, and monitor the impact of interventions. Few African countries have established renal registries and most have failed owing to resource constraints. In this article we briefly review the burden of chronic kidney disease and ESRD in Africa, and then consider the research questions that could be addressed by renal registries. We describe examples of the impact of registry data and summarize the sparse primary literature on country-wide renal replacement therapy in African countries over the past 20 years. Finally, we highlight some initiatives and opportunities for strengthening research on ESRD and renal replacement therapy in Africa. These include the establishment of the African Renal Registry and the availability of new areas for research. We also discuss capacity building, collaboration, open-access publication, and the strengthening of local journals, all measures that may improve the quantity, visibility, and impact of African research outputs. Copyright © 2017 Elsevier Inc. All rights reserved.

  4. 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.

  5. 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

  6. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

  7. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

  8. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

  9. Uses and limitations of registry and academic databases.

    PubMed

    Williams, William G

    2010-01-01

    A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. Copyright (c) 2010 Elsevier Inc. All rights reserved.

  10. 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.

  11. Big Data in Organ Transplantation: Registries and Administrative Claims

    PubMed Central

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

    2015-01-01

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

  12. Association between heavy precipitation events and waterborne outbreaks in four Nordic countries, 1992-2012.

    PubMed

    Guzman Herrador, Bernardo; de Blasio, Birgitte Freiesleben; Carlander, Anneli; Ethelberg, Steen; Hygen, Hans Olav; Kuusi, Markku; Lund, Vidar; Löfdahl, Margareta; MacDonald, Emily; Martinez-Urtaza, Jaime; Nichols, Gordon; Schönning, Caroline; Sudre, Bertrand; Trönnberg, Linda; Vold, Line; Semenza, Jan C; Nygård, Karin

    2016-12-01

    We conducted a matched case-control study to examine the association between heavy precipitation events and waterborne outbreaks (WBOs) by linking epidemiological registries and meteorological data between 1992 and 2012 in four Nordic countries. Heavy precipitation events were defined by above average (exceedance) daily rainfall during the preceding weeks using local references. We performed conditional logistic regression using the four previous years as the controls. Among WBOs with known onset date (n = 89), exceedance rainfall on two or more days was associated with occurrence of outbreak, OR = 3.06 (95% CI 1.38-6.78), compared to zero exceedance days. Stratified analyses revealed a significant association with single household water supplies, ground water as source and for outbreaks occurring during spring and summer. These findings were reproduced in analyses including all WBOs with known outbreak month (n = 186). The vulnerability of single households to WBOs associated with heavy precipitation events should be communicated to homeowners and implemented into future policy planning to reduce the risk of waterborne illness.

  13. 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.

  14. 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

  15. The National Film Registry: Acquiring Our Film Heritage.

    ERIC Educational Resources Information Center

    Ziegler, Roy A.

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

  16. The German Aortic Valve Registry (GARY): a nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis.

    PubMed

    Beckmann, A; Hamm, C; Figulla, H R; Cremer, J; Kuck, K H; Lange, R; Zahn, R; Sack, S; Schuler, G C; Walther, T; Beyersdorf, F; Böhm, M; Heusch, G; Funkat, A K; Meinertz, T; Neumann, T; Papoutsis, K; Schneider, S; Welz, A; Mohr, F W

    2012-07-01

    Background The increasing prevalence of severe aortic valve defects correlates with the increase of life expectancy. For decades, surgical aortic valve replacement (AVR), under the use of extracorporeal circulation, has been the gold standard for treatment of severe aortic valve diseases. In Germany ~12,000 patients receive isolated aortic valve surgery per year. For some time, percutaneous balloon valvuloplasty has been used as a palliative therapeutic option for very few patients. Currently, alternatives for the established surgical procedures such as transcatheter aortic valve implantation (TAVI) have become available, but there are only limited data from randomized studies or low-volume registries concerning long-time outcome. In Germany, the implementation of this new technology into hospital care increased rapidly in the past few years. Therefore, the German Aortic Valve Registry (GARY) was founded in July 2010 including all available therapeutic options and providing data from a large quantity of patients.Methods The GARY is assembled as a complete survey for all invasive therapies in patients with relevant aortic valve diseases. It evaluates the new therapeutic options and compares them to surgical AVR. The model for data acquisition is based on three data sources: source I, the mandatory German database for external performance measurement; source II, a specific registry dataset; and source III, a follow-up data sheet (generated by phone interview). Various procedures will be compared concerning observed complications, mortality, and quality of life up to 5 years after the initial procedure. Furthermore, the registry will enable a compilation of evidence-based indication criteria and, in addition, also a comparison of all approved operative procedures, such as Ross or David procedures, and the use of different mechanical or biological aortic valve prostheses.Results Since the launch of data acquisition in July 2010, almost all institutions performing

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

    PubMed

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

    2012-12-01

    In 2010, the American College of Medical Toxicology established its Case Registry, the Toxicology Investigators Consortium (ToxIC). ToxIC is a prospective registry, which exclusively compiles suspected and confirmed toxic exposure cases cared for at the bedside by medical toxicologists at its participating sites. The Registry aims to fulfill two important gaps in the field: a real-time toxicosurveillance system to identify current poisoning trends and a powerful research tool in toxicology. ToxIC allows extraction of information from medical records making it the most robust multicenter database on chemical toxicities in existence. All cases seen by medical toxicologists at participating institutions were entered in a database. Information characterizing patients entered in 2011 was tabulated. 2010 data was also included so that cumulative total numbers could be described as well. The current report is a summary of the data collected in 2011 in comparison to 2010 entries and also includes cumulative data through December 31st, 2011. During 2011, 28 sites with 49 specific institutions contributed a total of 6,456 cases to the Registry. The total number of cases entered into the registry at the end of 2011 was 10,392. Emergency departments remained the most common source of consultations in 2011, accounting for 53 % of cases. The most common reason for consultation was for pharmaceutical overdoses, which occurred in 48 % of patients, including intentional (37 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,492 entries in 23 % of cases), non-opioid analgesics (1,368 cases in 21 % of cases), opioids (17 %), antidepressants (16 %), stimulants/sympathomimetics (12 %), and ethanol (8 %). N-acetylcysteine was the most commonly administered antidote during 2011, similar to 2010, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab fragments (CroFab) were

  18. 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.

  19. Demographics of US pediatric contact dermatitis registry providers.

    PubMed

    Goldenberg, Alina; Jacob, Sharon E

    2015-01-01

    Children are as likely as adults to be sensitized and reactive to contact allergens. However, the prevailing data on pediatric allergic contact dermatitis are quantitatively and qualitatively limited because of a narrow geographic localization of data-reporting providers. The aim of the study was to present the first quarter results from the Loma Linda Pediatric Contact Dermatitis Registry focused on registered providers who self-identified as providing care for pediatric allergic contact dermatitis (ACD) within the United States. The US providers were invited to join the registry via completion of an online, secure, 11-question registration survey addressing demographics and clinical practice essentials. The presented results reflect data gathered within the first quarter of registry recruitment; registration is ongoing. Of 169 responders from 48 states, the majority of providers were female (60.4%), academic (55.6%), and dermatologists (76.3%). Based on individual provider averages, the minimum cumulative number of pediatric patch-test evaluations performed each year ranged between 1372 and 3468 children. The Pediatric Contact Dermatitis Registry provides a description of the current leaders in the realm of pediatric ACD and gaps, which are in need of attention. The registry allows for a collaborative effort to exchange information, educate providers, and foster investigative research with the hope of legislation that can reduce the disease burden of ACD in US children.

  20. The Italian Registry of Antiphospholipid Antibodies.

    PubMed

    Finazzi, G

    1997-01-01

    The clinical importance of antiphospholipid antibodies (APA) derives from their association with a syndrome of venous and arterial thrombosis, recurrent fetal loss and thrombocytopenia known as the antiphospholipid syndrome (APS). The Italian Registry of Antiphospholipid Antibodies was set up in 1989 for the purpose of collecting a large number of patients with lupus anticoagulant (LA) or anticardiolipin antibodies (ACA) for clinical studies in order to obtain more information on the clinical features of APS. The Italian Registry has completed two clinical studies and proposed an international trial on the treatment of APS patients. These activities of the Registry are reviewed herein. Additional information has been obtained from pertinent articles and abstracts published in journals covered by the Science Citation Index and Medline. The first study of the Registry was a retrospective analysis of enrolled patients which showed that: a) the prevalence of thrombosis and thrombocytopenia was similar in cases with idiopathic APA or APA secondary to systemic lupus erythematosus, and b) the rate of thrombosis was significantly reduced in patients with severe thrombocytopenia but not in those with only a mild reduction of the platelet count. The second study was a prospective survey of the natural history of the disease, showing that a) previous thrombosis and ACA titer > 40 units were independent predictors of subsequent vascular complications; b) a history of miscarriage or thrombosis is significantly associated with adverse pregnancy outcome; c) hematological malignancies can develop during follow-up and patients with APA should be considered at increased risk of developing NHL. Thus the possibility of a hematologic neoplastic disease should be borne in mind in the initial evaluation and during the follow-up of these patients. The latest initiative of the Registry was the proposal of an international, randomized clinical trial (WAPS study) aimed at assessing the

  1. 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.

  2. Fall Chinook Salmon Spawning Ground Surveys in the Snake River Basin Upriver of Lower Granite Dam, 2007 Annual Report.

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

    Garcia, A.P.; Bradbury, S.; Arnsberg, B.D.

    2008-11-25

    Redd counts are routinely used to document the spawning distribution of fall Chinook salmon (Oncorhynchus tshawytscha) in the Snake River basin upriver of Lower Granite Dam. The first reported redd counts were from aerial searches conducted intermittently between 1959 and 1978 (Irving and Bjornn 1981, Witty 1988; Groves and Chandler 1996)(Appendix 1). In 1986, the Washington Department of Fish and Wildlife began an annual monitoring program that, in addition to the Snake River, included aerial searches of the Grande Ronde River the first year (Seidel and Bugert 1987), and the Imnaha River in subsequent years (Seidel et al. 1988; Bugertmore » et al. 1989-1991; Mendel et al. 1992). The U. S. Fish and Wildlife Service and Idaho Power Company began contributing to this effort in 1991 by increasing the number of aerial searches conducted each year and adding underwater searches in areas of the Snake River that were too deep to be searched from the air (Connor et al. 1993; Garcia et al. 1994a, 1994b, 1996-2007; Groves 1993; Groves and Chandler 1996). The Nez Perce Tribe added aerial searches in the Clearwater River basin beginning in 1988 (Arnsberg et. al 1992), and the Salmon River beginning in 1992. Currently searches are conducted cooperatively by the Nez Perce Tribe, Idaho Power Company, and U. S. Fish and Wildlife Service. Our objective for this report was to consolidate the findings from annual redd searches counted upstream of Lower Granite Dam into a single document, containing detailed information about the searches from the most recent spawning season, and summary information from previous years. The work conducted in 2007 was funded by the Bonneville Power Administration and Idaho Power Company.« less

  3. Matching colonoscopy and pathology data in population-based registries: development of a novel algorithm and the initial experience of the New Hampshire Colonoscopy Registry.

    PubMed

    Greene, Mary Ann; Butterly, Lynn F; Goodrich, Martha; Onega, Tracy; Baron, John A; Lieberman, David A; Dietrich, Allen J; Srivastava, Amitabh

    2011-08-01

    The quality of polyp-level data in a population-based registry depends on the ability to match each polypectomy recorded by the endoscopist to a specific diagnosis on the pathology report. To review impediments encountered in matching colonoscopy and pathology data in a population-based registry. New Hampshire Colonoscopy Registry data from August 2006 to November 2008 were analyzed for prevalence of missing reports, discrepancies between colonoscopy and pathology reports, and the proportion of polyps that could not be matched because of multiple polyps submitted in the same container. New Hampshire Colonoscopy Registry. This study involved all consenting patients during the study period. Develop an algorithm for capturing number, size, location, and histology of polyps and for defining and flagging discrepancies to ensure data quality. The proportion of polyps with no assumption or discrepancy, the proportion of patient records eligible for determining the adenoma detection rate (ADR), and the number of patients with ≥3 adenomas. Only 50% of polyps removed during this period were perfectly matched, with no assumption or discrepancy. Records from only 69.9% and 29.7% of eligible patients could be used to determine the ADR and the number of patients with ≥3 adenomas, respectively. Rates of missing reports may have been higher in the early phase of establishment of the registry. This study highlights the impediments in collecting polyp-level data in a population-based registry and provides useful parameters for evaluating the quality and accuracy of data obtained from such registries. Copyright © 2011 American Society for Gastrointestinal Endoscopy. Published by Mosby, Inc. All rights reserved.

  4. LSAT Dimensionality Analysis for the December 1991, June 1992, and October 1992 Administrations. Statistical Report. LSAC Research Report Series.

    ERIC Educational Resources Information Center

    Douglas, Jeff; Kim, Hae-Rim; Roussos, Louis; Stout, William; Zhang, Jinming

    An extensive nonparametric dimensionality analysis of latent structure was conducted on three forms of the Law School Admission Test (LSAT) (December 1991, June 1992, and October 1992) using the DIMTEST model in confirmatory analyses and using DIMTEST, FAC, DETECT, HCA, PROX, and a genetic algorithm in exploratory analyses. Results indicate that…

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

    PubMed Central

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

    2017-01-01

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

  6. The Toxicology Investigators Consortium Case Registry--the 2014 Experience.

    PubMed

    Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey

    2015-12-01

    The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently

  7. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... do so by the CED or CEVAD). (b)(1) The registry shall include, but not be limited to: (i) Which NOAA ENC ® cells were provided to each customer; (ii) Edition number of each cell provided; (iii) Updates provided for each cell; (iv) Method of distribution for each customer. (2) The registry may also include...

  8. The Psoriatic Arthritis Registry of Turkey: results of a multicentre registry on 1081 patients.

    PubMed

    Kalyoncu, Umut; Bayindir, Özün; Ferhat Öksüz, Mustafa; Doğru, Atalay; Kimyon, Gezmiş; Tarhan, Emine Figen; Erden, Abdulsamet; Yavuz, Şule; Can, Meryem; Çetin, Gözde Yıldırım; Kılıç, Levent; Küçükşahin, Orhan; Omma, Ahmet; Ozisler, Cem; Solmaz, Dilek; Bozkirli, Emine Duygu Ersözlü; Akyol, Lütfi; Pehlevan, Seval Masatlıoğlu; Gunal, Esen Kasapoglu; Arslan, Fatos; Yılmazer, Barış; Atakan, Nilgun; Aydın, Sibel Zehra

    2017-02-01

    The aim was to assess the characteristics of PsA, find out how well the disease is controlled in real life, demonstrate the treatments and identify the unmet needs. The PsA registry of Turkey is a multicentre Web-based registry established in 2014 and including 32 rheumatology centres. Detailed data regarding demographics for skin and joint disease, disease activity assessments and treatment choices were collected. One thousand and eighty-one patients (64.7% women) with a mean (sd) PsA duration of 5.8 (6.7) years were enrolled. The most frequent type of PsA was polyarticular [437 (40.5%)], followed by oligoarticular [407 (37.7%)] and axial disease [372 (34.4%)]. The mean (sd) swollen and tender joint counts were 1.7 (3) and 3.6 (4.8), respectively. Of these patients, 38.6% were on conventional synthetic DMARD monotherapy, 7.1% were on anti-TNF monotherapy, and 22.5% were using anti-TNF plus conventional synthetic DMARD combinations. According to DAS28, 86 (12.4%) patients had high and 105 (15.2%) had moderate disease activity. Low disease activity was achieved in 317 (45.7%) patients, and 185 (26.7%) were in remission. Minimal disease activity data could be calculated in 247 patients, 105 of whom (42.5%) had minimal disease activity. The major differences among sexes were that women were older and had less frequent axial disease, more fatigue, higher HAQ scores and less remission. The PsA registry of Turkey had similarities with previously published registries, supporting its external validity. The finding that women had more fatigue and worse functioning as well as the high percentage of active disease state highlight the unmet need in treatment of PsA. © The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  9. Trustee Quarterly, 1992.

    ERIC Educational Resources Information Center

    Trustee Quarterly, 1992

    1992-01-01

    The four issues of "Trustee Quarterly" contained in this document focus on topics of current concern to community college trustees. The winter 1992 issue offers articles on the trustee's role in politics, community colleges as community catalysts, Lewis and Clark Community College's (Illinois) strategic planning process, staff development…

  10. Prediagnostic alcohol consumption and colorectal cancer survival: The Colon Cancer Family Registry.

    PubMed

    Phipps, Amanda I; Robinson, Jamaica R; Campbell, Peter T; Win, Aung Ko; Figueiredo, Jane C; Lindor, Noralane M; Newcomb, Polly A

    2017-05-15

    Although previous studies have noted an increased risk of colorectal cancer (CRC) among moderate to heavy alcohol consumers in comparison with nondrinkers, the relation between alcohol consumption and CRC survival remains unclear. Cases of incident invasive CRC diagnosed between 1997 and 2007 were identified via population-based cancer registries at 4 study sites in the Colon Cancer Family Registry. Study participants completed a risk-factor questionnaire on prediagnostic behaviors, including wine, beer, and liquor consumption, at the baseline. Prospective follow-up for survival was conducted for 4966 CRC cases. Cox regression was used to compare nondrinkers with individuals who consumed, on average, 1 or more servings of alcohol per day in the years preceding their CRC diagnosis with respect to overall and disease-specific survival. Separate analyses by beverage type, stratified by patient and tumor attributes, were also performed. All models were adjusted for the age at diagnosis, sex, study site, year of diagnosis, smoking history, body mass index, and education. Prediagnostic beer and liquor consumption was not associated with CRC survival; however, higher levels of wine consumption were modestly associated with a better prognosis overall (CRC-specific hazard ratio [HR], 0.70, 95% confidence interval [CI], 0.48-1.03; overall HR, 0.70; 95% CI, 0.53-0.94). Similar patterns were noted in stratified analyses. These findings suggest that prediagnostic wine consumption is modestly associated with more favorable survival after CRC. Cancer 2017;123:1035-43. © 2016 American Cancer Society. © 2016 American Cancer Society.

  11. Nordic Cancer Registries - an overview of their procedures and data comparability.

    PubMed

    Pukkala, Eero; Engholm, Gerda; Højsgaard Schmidt, Lise Kristine; Storm, Hans; Khan, Staffan; Lambe, Mats; Pettersson, David; Ólafsdóttir, Elínborg; Tryggvadóttir, Laufey; Hakanen, Tiina; Malila, Nea; Virtanen, Anni; Johannesen, Tom Børge; Larønningen, Siri; Ursin, Giske

    2018-04-01

    The Nordic Cancer Registries are among the oldest population-based registries in the world, with more than 60 years of complete coverage of what is now a combined population of 26 million. However, despite being the source of a substantial number of studies, there is no published paper comparing the different registries. Therefore, we did a systematic review to identify similarities and dissimilarities of the Nordic Cancer Registries, which could possibly explain some of the differences in cancer incidence rates across these countries. We describe and compare here the core characteristics of each of the Nordic Cancer Registries: (i) data sources; (ii) registered disease entities and deviations from IARC multiple cancer coding rules; (iii) variables and related coding systems. Major changes over time are described and discussed. All Nordic Cancer Registries represent a high quality standard in terms of completeness and accuracy of the registered data. Even though the information in the Nordic Cancer Registries in general can be considered more similar than any other collection of data from five different countries, there are numerous differences in registration routines, classification systems and inclusion of some tumors. These differences are important to be aware of when comparing time trends in the Nordic countries.

  12. The climatic assessment of droughts in the Republic of Moldova between 1891 and 2007

    NASA Astrophysics Data System (ADS)

    Potop, Vera

    2009-04-01

    This study describes the drought episodes in the Republic of Moldova from 18 weather stations and from Chisinau Observatory, with monthly rainfalls measurements obtained during periods of 62 and 116 years, respectively. The catalogue of the droughts for spring, summer and autumn have been identified and elaborated. As a result of the analysis of drought catalogue for a period of over 100 years, an increase in the tendencies of frequency and intensities of the studied phenomena after the 1980s was observed. The longest drought periods were noticed at the beginning of the 1950s and 1960s reaching their highest points in the decades of 1981-1990 and 1991-2001 with the lowest points in the 1970s. Similarly, during the last 20 years, in 12 cases (1986, 1990, 1992, 1994, 1996, 1998, 2000, 2002, 2003, 2005, 2006 and 2007) of drought, 9 have been registered as being of a severe intensity degree and/or the extreme intensity degree. In 1990, 1992, 2003 and 2007 drought season occurred during the entire summer season. If it compare data for the whole period of more than a century, it will see that droughts have occurred once every 3 years, and after the 1980s their frequency has already increased to once every 2 years. Besides, the estimate of the territories affected by drought was made for every season for the first time, as well as for the whole vegetation period of each drought year. Surfer software (by Golden Software Inc.) as tools for estimating spatial lows of distribution drought event in the territory of Moldova it was used. Acknowledgements: This research was supported by Research Project MSM-6046070901.

  13. The Toxicology Investigators Consortium Case Registry-the 2015 Experience.

    PubMed

    Farrugia, Lynn A; Rhyee, Sean H; Campleman, Sharan L; Ruha, Anne-Michelle; Weigand, Timothy; Wax, Paul M; Brent, Jeffrey

    2016-09-01

    The American College of Medical Toxicology established the Toxicology Investigators Consortium (ToxIC) Case Registry in 2010. The Registry contains all medical toxicology consultations performed at participating sites. The Registry has continued to grow since its inception, and as of December 31, 2015, contains 43,099 cases. This is the sixth annual report of the ToxIC Registry, summarizing the additional 8115 cases entered in 2015. Cases were identified by a query of the Registry for all cases entered between January 1 and December 31, 2015. Specific data reviewed for analysis included demographics (age, race, gender), source of consultation, reason for consultation, agents and agent classes involved in exposures, signs, symptoms, clinical findings, fatalities, and treatment. By the end of 2015, there were 50 active sites, consisting of 101 separate health-care facilities; 51.2 % of cases involved females. Adults between the ages of 19 and 65 made up the majority (64.2 %) of Registry cases. Caucasian race was the most commonly reported (55.6 %); 9.6 % of cases were identified as Hispanic ethnicity. Inpatient and emergency department referrals were by far the most common referral sources (92.9 %). Intentional pharmaceutical exposures remained the most frequent reason for consultation, making up 52.3 % of cases. Of these intentional pharmaceutical exposures, 69 % represented an attempt at self-harm, and 85.6 % of these were a suicide attempt. Nonopioid analgesics, sedative-hypnotics, and antidepressant agents were the most commonly reported agent classes in 2015. Almost one-third of Registry cases involved a diagnosed toxidrome (32.8 %), with a sedative-hypnotic toxidrome being the most frequently described. Significant vital sign abnormalities were recorded in 25.3 % of cases. There were 98 fatalities reported in the Registry (1.2 %). Adverse drug reactions were reported in 4.3 % of cases. Toxicological treatment was given in 65.3 % of cases, with 33.0

  14. Microbiological and molecular characterization of Corynebacterium diphtheriae isolated in Algeria between 1992 and 2015.

    PubMed

    Benamrouche, N; Hasnaoui, S; Badell, E; Guettou, B; Lazri, M; Guiso, N; Rahal, K

    2016-12-01

    The objectives of this study were to undertake the microbiological and molecular characterization of Corynebacterium diphtheriae isolates collected in Algeria during epidemic and post-epidemic periods between 1992 and 2015. Microbiological characterization includes the determination of biotype and toxigenicity status using phenotypic and genotypic methods. Antimicrobial susceptibility was determined by the E-test method. Molecular characterization was performed by multi-locus sequence typing. In total, there were 157 cases of C. diphtheriae isolates, 127 in patients with respiratory diphtheria and 30 with ozena. Isolates with a mitis biotype were predominant (122 out of 157; 77.7%) followed by belfanti (28 out of 157; 17.8%) and gravis biotype (seven out of 157; 4.5%). Toxigenic isolates were predominant in the period 1992-2006 (74 out of 134) whereas in the period 2007-2015, only non-toxigenic isolates circulated (23 out of 23). All 157 isolates were susceptible to erythromycin, gentamicin, vancomycin and cotrimoxazole. Reduced susceptibility to penicillin G, cefotaxime, tetracycline and chloramphenicol was detected in 90 (57.3%), 88 (56.1%), 112 (71.3%) and 90 (57.3%) isolates, respectively. Multi-locus sequence typing analysis indicates that sequence type 116 (ST-116) was the most frequent, with 65 out of 100 isolates analysed, in particular during the epidemic period 1992-1999 (57 out of 65 isolates). In the post-epidemic period, 2000-2015, 13 different sequence types were isolated. All belfanti isolates (ten out of 100 isolates) belonged to closely related sequence types grouped in a phylogenetically distinct eBurst group and were collected exclusively in ozena cases. In conclusion, the epidemic period was associated with ST-116 while the post-epidemic period was characterized by more diversity. Belfanti isolates are grouped in a phylogenetically distinct clonal complex. Copyright © 2016 European Society of Clinical Microbiology and Infectious Diseases

  15. The German national registry for primary immunodeficiencies (PID)

    PubMed Central

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

    2013-01-01

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

  16. Children Worldwide, 1992.

    ERIC Educational Resources Information Center

    Lejeune, Genevieve, Ed.

    1992-01-01

    Each of the three journal issues comprising volume 19 (1992) of "Children Worldwide" focuses on a specific theme. Issue 1 contains six articles about refugee children, including essays about a community self-help approach in Pakistan, unaccompanied minors in Hong Kong, and refugee families raising children in a new culture; guidelines…

  17. The Mataró Stroke Registry: a 10-year registry in a community hospital.

    PubMed

    Palomeras Soler, E; Fossas Felip, P; Casado Ruiz, V; Cano Orgaz, A; Sanz Cartagena, P; Muriana Batiste, D

    2015-06-01

    A prospective stroke registry leads to improved knowledge of the disease. We present data on the Mataró Hospital Registry. In February-2002 a prospective stroke registry was initiated in our hospital. It includes sociodemographic data, previous diseases, clinical, topographic, etiological and prognostic data. We have analyzed the results of the first 10 years. A total of 2,165 patients have been included, 54.1% male, mean age 73 years. The most frequent vascular risk factor was hypertension (65.4%). Median NIHSS on admission: 3 (interquartile range, 1-8). Stroke subtype: 79.7% ischemic strokes, 10.9% hemorrhagic, and 9.4% TIA. Among ischemic strokes, the etiology was cardioembolic in 26.5%, large-vessel disease in 23.7%, and small-vessel in 22.9%. The most frequent topography of hemorrhages was lobar (47.4%), and 54.8% were attributed to hypertension. The median hospital stay was 8 days. At discharge, 60.7% of patients were able to return directly to their own home, and 52.7% were independent for their daily life activities. After 3 months these percentages were 76.9% and 62.9%, respectively. Hospital mortality was 6.5%, and after 3 months 10.9%. Our patient's profile is similar to those of other series, although the severity of strokes was slightly lower. Length of hospital stay, short-term and medium term disability, and mortality rates are good, if we compare them with other series. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

  18. Research and technology, 1992

    NASA Technical Reports Server (NTRS)

    1993-01-01

    Selected research and technology activities at Ames Research Center, including the Moffett Field site and the Dryden Flight Research Facility, are summarized. These activities exemplify the Center's varied and productive research efforts for 1992.

  19. Presenting an Evaluation Model for the Cancer Registry Software.

    PubMed

    Moghaddasi, Hamid; Asadi, Farkhondeh; Rabiei, Reza; Rahimi, Farough; Shahbodaghi, Reihaneh

    2017-12-01

    As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the general and specific criteria of the cancer registry software along with their sub-criteria. The evaluation method of this study was chosen as a criteria-based evaluation method based on the findings. The model of this study encompasses various dimensions of cancer registry software and a proper method for evaluating it. The strong point of this evaluation model is the separation between general criteria and the specific ones, while trying to fulfill the comprehensiveness of the criteria. Since this model has been validated, it can be used as a standard to evaluate the cancer registry software.

  20. Assessment of Registration Information on Methodological Design of Acupuncture RCTs: A Review of 453 Registration Records Retrieved from WHO International Clinical Trials Registry Platform

    PubMed Central

    Gu, Jing; Wang, Qi; Wang, Xiaogang; Li, Hailong; Gu, Mei; Ming, Haixia; Dong, Xiaoli; Yang, Kehu; Wu, Hongyan

    2014-01-01

    Background. This review provides the first methodological information assessment of protocol of acupuncture RCTs registered in WHO International Clinical Trials Registry Platform (ICTRP). Methods. All records of acupuncture RCTs registered in the ICTRP have been collected. The methodological design assessment involved whether the randomization methods, allocation concealment, and blinding were adequate or not based on the information of registration records (protocols of acupuncture RCTs). Results. A total of 453 records, found in 11 registries, were examined. Methodological details were insufficient in registration records; there were 76.4%, 89.0%, and 21.4% records that did not provide information on randomization methods, allocation concealment, and blinding respectively. The proportions of adequate randomization methods, allocation concealment, and blinding were only 107 (23.6%), 48 (10.6%), and 210 (46.4%), respectively. The methodological design improved year by year, especially after 2007. Additionally, methodology of RCTs with ethics approval was clearly superior to those without ethics approval and different among registries. Conclusions. The overall methodological design based on registration records of acupuncture RCTs is not very well but improved year by year. The insufficient information on randomization methods, allocation concealment, and blinding maybe due to the relevant description is not taken seriously in acupuncture RCTs' registration. PMID:24688591

  1. Assessment of Registration Information on Methodological Design of Acupuncture RCTs: A Review of 453 Registration Records Retrieved from WHO International Clinical Trials Registry Platform.

    PubMed

    Gu, Jing; Wang, Qi; Wang, Xiaogang; Li, Hailong; Gu, Mei; Ming, Haixia; Dong, Xiaoli; Yang, Kehu; Wu, Hongyan

    2014-01-01

    Background. This review provides the first methodological information assessment of protocol of acupuncture RCTs registered in WHO International Clinical Trials Registry Platform (ICTRP). Methods. All records of acupuncture RCTs registered in the ICTRP have been collected. The methodological design assessment involved whether the randomization methods, allocation concealment, and blinding were adequate or not based on the information of registration records (protocols of acupuncture RCTs). Results. A total of 453 records, found in 11 registries, were examined. Methodological details were insufficient in registration records; there were 76.4%, 89.0%, and 21.4% records that did not provide information on randomization methods, allocation concealment, and blinding respectively. The proportions of adequate randomization methods, allocation concealment, and blinding were only 107 (23.6%), 48 (10.6%), and 210 (46.4%), respectively. The methodological design improved year by year, especially after 2007. Additionally, methodology of RCTs with ethics approval was clearly superior to those without ethics approval and different among registries. Conclusions. The overall methodological design based on registration records of acupuncture RCTs is not very well but improved year by year. The insufficient information on randomization methods, allocation concealment, and blinding maybe due to the relevant description is not taken seriously in acupuncture RCTs' registration.

  2. 76 FR 28403 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ... [Docket No. FMCSA-2008-0363] RIN 2126-AA97 National Registry of Certified Medical Examiners ACTION: Notice... by training providers in implementing the National Registry of Certified Medical Examiners (National... included minimum training requirements for medical examiners. The draft guidance announced by this notice...

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

    PubMed

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

    2014-01-01

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

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

    PubMed Central

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

    2014-01-01

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

  5. 20 CFR 404.1048 - Contribution and benefit base after 1992.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 2 2013-04-01 2013-04-01 false Contribution and benefit base after 1992. 404... Contribution and benefit base after 1992. (a) General. The contribution and benefit base after 1992 is figured... this section, the calendar year in which the contribution and benefit base is figured is called the...

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

    PubMed

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

    2015-12-01

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

  7. BioSWR--semantic web services registry for bioinformatics.

    PubMed

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  8. Utility of an Australasian registry for children undergoing radiation treatment.

    PubMed

    Ahern, Verity

    2014-12-01

    The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16 years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10-15 years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology. © 2014 The Royal Australian and New Zealand College of Radiologists.

  9. Natural gas annual 1992: Volume 1

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

    Not Available

    1993-11-22

    This document provides information on the supply and disposition of natural gas to a wide audience including industry, consumers, Federal and State agencies, and education institutions. The 1992 data are presented in a sequence that follows natural gas (including supplemental supplies) from its production top its end use. Tables summarizing natural gas supply and disposition from 1988 to 1992 are given for each Census Division and each State. Annual historical data are shown at the national level. Volume 2 of this report presents State-level historical data.

  10. EPA Facility Registry System (FRS): NEPT

    EPA Pesticide Factsheets

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

  11. EPA Facility Registry Service (FRS): NEI

    EPA Pesticide Factsheets

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

  12. SMARTE 2007 TUTORIAL - JANUARY 2007 REVISION

    EPA Science Inventory

    SMARTe 2007 is a web-based decision support tool intended to help revitalization practitioners find information, perform data analysis, communicate, and evaluate future reuse options for a site or area. This tutorial CD was developed to help users navigate SMARTe 2007. It is appr...

  13. 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.

  14. Ensuring quality in studies linking cancer registries and biobanks.

    PubMed

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

    2010-04-01

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

  15. The Dutch EPS Registry: increasing the knowledge of encapsulating peritoneal sclerosis.

    PubMed

    Korte, M R; Boeschoten, E W; Betjes, M G H

    2009-09-01

    Encapsulating peritoneal sclerosis (EPS) is a rare condition characterised by fibrotic thickening of the visceral peritoneum, leading to encapsulating of the intestines with partial or total intestinal obstruction. EPS is a serious complication of peritoneal dialysis (PD) with high morbidity and a mortality exceeding 50%. At present, there is uncertainty concerning the incidence and the risk factors involved in the development of EPS. To address these questions a nationwide registry has been initiated. The primary goals of the registry are to record the incidence of EPS and investigate the association of different variables, such as PD duration, medication, dialysis solutions and kidney transplantation with EPS. The registry will improve the knowledge of EPS and will serve to develop guidelines and necessary management strategies. From the registry different research activities can be initiated. A major challenge lies in the establishment of criteria that allow a timely diagnosis of EPS. At present, there are no diagnostic tools that can accurately detect EPS at an early stage. For this reason, besides patients with proven EPS, the clinical suspicion of EPS will be a sufficient criterion for inclusion in the registry. This nationwide EPS registry is currently enrolling patients.

  16. Registries in European post-marketing surveillance: a retrospective analysis of centrally approved products, 2005-2013.

    PubMed

    Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim; De Bruin, Marie L; Arlett, Peter; Kurz, Xavier

    2017-12-01

    Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. European Public Assessment Reports were consulted to identify products for which a request for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were collected from EMA electronic record keeping systems. Of 392 products that received a positive Committee for Medicinal Products for Human Use opinion during 2005-2013, 31 registries were requested for 30 products in total. Sixty-five percent were product registries whereas 35% were disease registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. The delays found in getting new registries up and running support the need to improve the timeliness of data collection in the post-marketing setting. Methodological challenges met in conducting this study highlighted the need for a clarification of definitions and epidemiological concepts around patient registries. The results will inform the EMA Patient Registry initiative to support use of existing patient registries for the post-authorisation benefit-risk monitoring of medicinal products. © 2017 Commonwealth of Australia. Pharmacoepidemiology & Drug Safety © 2017 John Wiley & Sons, Ltd. © 2017 Commonwealth of Australia. Pharmacoepidemiology

  17. Mortality and morbidity associated with gunshot in raptorial birds from the province of Quebec: 1986 to 2007

    PubMed Central

    Desmarchelier, Marion; Santamaria-Bouvier, Ariane; Fitzgérald, Guy; Lair, Stéphane

    2010-01-01

    Although raptors have been protected for decades in Quebec they are still regular victims of poaching. The objective of this study was to characterize cases of raptor shootings in Quebec over the last 2 decades. We reviewed clinical files, radiographs, and pathology reports on 4805 free-flying birds of prey admitted to the Faculté de médecine vétérinaire between 1986 and 2007. Evidence of gunshots was detected in 6.4% of the birds. Large species, such as ospreys, turkey vultures, snowy owls, and bald eagles represented the most frequently targeted species. The percentage of shot birds has decreased from 13.4% during 1991 to 1992 to 2.2% in 2006 to 2007. Potential reasons for this trend include a decrease in the presence of firearms in raptor habitats and changes in human attitude towards raptorial birds. PMID:20357944

  18. Pulpwood production in the North-Central Region, 1992.

    Treesearch

    Ronald L. Hackett; Ronald J. Piva

    1994-01-01

    Lake States pulpwood production increased to 8.8 million cords in 1992. Central States pulpwood production increased about 5%--from 339 thousand cords in 1991 to 356 thousand cords in 1992. Pulpwood production is shown by county and species group for Michigan, Minnesota, Wisconsin, Iowa, Missouri, Illinois, and Indiana.

  19. Marrow donor registry and cord blood bank in Taiwan.

    PubMed

    Lee, Tsung Dao

    2002-08-01

    Unrelated Bone marrow transplant was initiated thirty years ago. Though there are over millions of donors registered with the bone marrow registries worldwide, Asian patients rarely find a match with all these donors. Tzu Chi Marrow Donor Registry was established to meet this need. It has become the largest Asian marrow donor registry in the world. With the introduction of high technology to test the HLA of the donors and recipients, the success rate of bone marrow transplant is greatly improved among Asian countries. 50% of blood disease Asian patients who cannot find a bone marrow matched donor will be complemented by the establishment of cord blood banks in Taiwan.

  20. The Different Association between Serum Ferritin and Mortality in Hemodialysis and Peritoneal Dialysis Patients Using Japanese Nationwide Dialysis Registry

    PubMed Central

    Maruyama, Yukio; Yokoyama, Keitaro; Yokoo, Takashi; Shigematsu, Takashi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu

    2015-01-01

    Background/Aims Monitoring of serum ferritin levels is widely recommended in the management of anemia among patients on dialysis. However, associations between serum ferritin and mortality are unclear and there have been no investigations among patients undergoing peritoneal dialysis (PD). Methods Baseline data of 191,902 patients on dialysis (age, 65 ± 13 years; male, 61.1%; median dialysis duration, 62 months) were extracted from a nationwide dialysis registry in Japan at the end of 2007. Outcomes, such as one-year mortality, were then evaluated using the registry at the end of 2008. Results Within one year, a total of 15,284 (8.0%) patients had died, including 6,210 (3.2%) cardiovascular and 2,707 (1.4%) infection-related causes. Higher baseline serum ferritin levels were associated with higher mortality rates among patients undergoing hemodialysis (HD). In contrast, there were no clear associations between serum ferritin levels and mortality among PD patients. Multivariate Cox regression analysis of HD patients showed that those in the highest serum ferritin decile group had higher rates of all-cause and cardiovascular mortality than those in the lowest decile group (hazard ratio [HR], 1.54; 95% confidence interval [CI], 1.31–1.81 and HR, 1.44; 95% CI, 1.13–1.84, respectively), whereas associations with infection-related mortality became non-significant (HR, 1.14; 95% CI, 0.79–1.65). Conclusions Using Japanese nationwide dialysis registry, higher serum ferritin values were associated with mortality not in PD patients but in HD patients. PMID:26599216

  1. Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment.

    PubMed

    Grill, Joshua D; Hoang, Dan; Gillen, Daniel L; Cox, Chelsea G; Gombosev, Adrijana; Klein, Kirsten; O'Leary, Steve; Witbracht, Megan; Pierce, Aimee

    2018-01-01

    Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.

  2. Modeling possible spreadings of a buoyant surface plume with lagrangian and eulerian approaches at different resolutions using flow syntheses from 1992-2007 - a Gulf of Mexico study

    NASA Astrophysics Data System (ADS)

    Tulloch, R.; Hill, C. N.; Jahn, O.

    2010-12-01

    We present results from an ensemble of BP oil spill simulations. The oil spill slick is modeled as a buoyant surface plume that is transported by ocean currents modulated, in some experiments, by surface winds. Ocean currents are taken from ECCO2 project (see http://ecco2.org ) observationally constrained state estimates spanning 1992-2007. In this work we (i) explore the role of increased resolution of ocean eddies, (ii) compare inferences from particle based, lagrangian, approaches with eulerian, field based, approaches and (ii) examine the impact of differential response of oil particles and water to normal and extreme, hurricane derived, wind stress. We focus on three main questions. Is the simulated response to an oil spill markedly different for different years, depending on ocean circulation and wind forcing? Does the simulated response depend heavily on resolution and are lagrangian and eulerian estimates comparable? We start from two regional configurations of the MIT General Circulation Model (MITgcm - see http://mitgcm.org ) at 16km and 4km resolutions respectively, both covering the Gulf of Mexico and western North Atlantic regions. The simulations are driven at open boundaries with momentum and hydrographic fields from ECCO2 observationally constrained global circulation estimates. The time dependent surface flow fields from these simulations are used to transport a dye that can optionally decay over time (approximating biological breakdown) and to transport lagrangian particles. Using these experiments we examine the robustness of conclusions regarding the fate of a buoyant slick, injected at a single point. In conclusion we discuss how future drilling operations could use similar approaches to better anticipate outcomes of accidents both in this region and elsewhere.

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

    PubMed

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

    2015-12-01

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

  4. Construction and management of ARDS/sepsis registry with REDCap.

    PubMed

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

    2014-09-01

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

  5. Assessing race and ethnicity data quality across cancer registries and EMRs in two hospitals.

    PubMed

    Lee, Simon J Craddock; Grobe, James E; Tiro, Jasmin A

    2016-05-01

    Measurement of patient race/ethnicity in electronic health records is mandated and important for tracking health disparities. Characterize the quality of race/ethnicity data collection efforts. For all cancer patients diagnosed (2007-2010) at two hospitals, we extracted demographic data from five sources: 1) a university hospital cancer registry, 2) a university electronic medical record (EMR), 3) a community hospital cancer registry, 4) a community EMR, and 5) a joint clinical research registry. The patients whose data we examined (N = 17 834) contributed 41 025 entries (range: 2-5 per patient across sources), and the source comparisons generated 1-10 unique pairs per patient. We used generalized estimating equations, chi-squares tests, and kappas estimates to assess data availability and agreement. Compared to sex and insurance status, race/ethnicity information was significantly less likely to be available (χ(2 )> 8043, P < .001), with variation across sources (χ(2 )> 10 589, P < .001). The university EMR had a high prevalence of "Unknown" values. Aggregate kappa estimates across the sources was 0.45 (95% confidence interval, 0.45-0.45; N = 31 276 unique pairs), but improved in sensitivity analyses that excluded the university EMR source (κ = 0.89). Race/ethnicity data were in complete agreement for only 6988 patients (39.2%). Pairs with a "Black" data value in one of the sources had the highest agreement (95.3%), whereas pairs with an "Other" value exhibited the lowest agreement across sources (11.1%). Our findings suggest that high-quality race/ethnicity data are attainable. Many of the "errors" in race/ethnicity data are caused by missing or "Unknown" data values. To facilitate transparent reporting of healthcare delivery outcomes by race/ethnicity, healthcare systems need to monitor and enforce race/ethnicity data collection standards. © The Author 2015. Published by Oxford University Press on behalf of the American

  6. Epidemiology and Clinical Features of Adult Patients with Psoriasis in Malaysia: 10-Year Review from the Malaysian Psoriasis Registry (2007-2016).

    PubMed

    Mohd Affandi, Azura; Khan, Iman; Ngah Saaya, Nooraishah

    2018-01-01

    Psoriasis is a chronic inflammatory skin disease affecting 2-3% of the general population. To evaluate the epidemiology and clinical characteristics of patients with psoriasis who seek treatment in outpatient dermatology clinics throughout hospitals in Malaysia. Data were obtained from the Malaysian Psoriasis Registry (MPR). All patients (aged 18 and above) who were notified to the registry from July 2017 to December 2017 were included in this study. Among 15,794 patients, Malays were the most common (50.4%), followed by Chinese (21.4%), Indian (17.6%), and others (10.6%). The mean age onset of psoriasis for our study population was 35.14 ± 16.16 years. Male to female ratio was 1.3 : 1. 23.1% of patients had positive family history of psoriasis. The most common clinical presentation was chronic plaque psoriasis (85.1%), followed by guttate psoriasis (2.9%), erythrodermic psoriasis (1.7%), and pustular psoriasis (1.0%). Majority of our patients (76.6%) had a mild disease with BSA < 10%. 57.1% of patients had nail involvement, while arthropathy was seen in 13.7% of patients. Common triggers of the disease include stress (48.3%), sunlight (24.9%), and infection (9.1%). Comorbidities observed include obesity (24.3%), hypertension (25.6%), hyperlipidemia (18%), diabetes mellitus (17.2%), ischaemic heart disease (5.4%), and cerebrovascular disease (1.6%). The mean DLQI (Dermatology Life Quality Index) was 8.5 ± 6.6. One-third (33.1%) of the patients had a DLQI score of more than 10, while 14.2% of patients reported no effect at all. Our study on the epidemiological data of adult patients with psoriasis in Malaysia showed a similar clinical profile and outcome when compared to international published studies on the epidemiology of psoriasis.

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

    PubMed

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

    2018-06-01

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

  8. Development of a Web-Based Nationwide Korean Pediatric Dental Sedation Registry.

    PubMed

    Choi, Sung Chul; Yang, Yeonmi; Yoo, Seunghoon; Kim, Jiyeon; Jeong, Taesung; Shin, Teo Jeon

    Finding a balance between sedation efficacy and safety remains an ongoing challenge. In children, the risk of sedation-related complications is relatively high. It is of utmost importance to determine the factors related to improved overall sedation outcomes. However, most previous reports have been based on small samples at single institutions. The Korean Academy of Pediatric Dentistry (KAPD) developed a Korean Pediatric Dental Sedation Registry using a web-based platform. Specialists in pediatric dental sedation selected the itemized list included within the registry through an extensive literature review. The web-based registry was built into the KAPD homepage to facilitate easy access to the sedation data. All teaching and university hospitals agreed to participate in the Korean Pediatric Dental Sedation Registry. This is the first attempt to collect sedation data on a nationwide scale in the field of pediatric dentistry. The sedation database established with the registry may facilitate standardizing and improving pediatric dental sedation clinical practices.

  9. Childhood Vesicoureteral Reflux Studies: Registries and Repositories Sources and Nosology

    PubMed Central

    Chesney, Russell W.; Patters, Andrea B.

    2012-01-01

    Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. PMID:23044377

  10. Childhood vesicoureteral reflux studies: registries and repositories sources and nosology.

    PubMed

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

    Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. Copyright © 2012 Journal of Pediatric Urology Company. All rights reserved.

  11. CIRSE Vascular Closure Device Registry

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

    Reekers, Jim A., E-mail: j.a.reekers@amc.uva.nl; Mueller-Huelsbeck, Stefan; Libicher, Martin

    2011-02-15

    Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0-14.5] for antegrade access and 1.8% (95% CI 1.1-2.9) for retrograde access (Pmore » = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only <0.5% of patients. Postdeployment bleeding occurred in 6.4%, and most these (51.5%) could be managed with light manual compression. During follow-up, other device-related complications were reported in 1.3%: seven false aneurysms, three hematoma >5.9 cm, and two vessel occlusions. Conclusion: The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters.« less

  12. CIRSE Vascular Closure Device Registry

    PubMed Central

    Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2010-01-01

    Purpose Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only <0.5% of patients. Postdeployment bleeding occurred in 6.4%, and most these (51.5%) could be managed with light manual compression. During follow-up, other device-related complications were reported in 1.3%: seven false aneurysms, three hematoma >5.9 cm, and two vessel occlusions. Conclusion The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters. PMID:20981425

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

    PubMed Central

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

    2017-01-01

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

  14. 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.

  15. Wilderness Medicine Newsletter, 1992.

    ERIC Educational Resources Information Center

    Wilderness Medicine Newsletter, 1992

    1992-01-01

    This document consists of the six issues of "Wilderness Medicine Newsletter" published in 1992. This journal, subtitled "For the recognition, treatment, and prevention of wilderness emergencies," includes feature articles, book reviews, product reviews, letters to the editor, notices of upcoming wilderness conferences, and…

  16. Ulysses log 1992

    NASA Technical Reports Server (NTRS)

    Perez, Raul Garcia

    1993-01-01

    The Ulysses Log tells the story of some intriguing problems that we (=The Spacecraft Team) have encountered. Ulysses was launched on 6 Oct. 1990, and it made the fastest trip to Jupiter (8 Feb. 1992). It is presently going out of the ecliptic. This paper presents log entries from the following areas: (1) ingenious maneuvers; (2) telecommunication problems; and (3) surprises.

  17. Cancer patterns in Inuit Nunangat: 1998-2007.

    PubMed

    Carrière, Gisèle M; Tjepkema, Michael; Pennock, Jennifer; Goedhuis, Neil

    2012-05-15

    To compare cancer incidence patterns between residents of Inuit Nunangat and the rest of Canada. Cancer cases were geographically linked to either Inuit Nunangat or the rest of Canada using postal codes or other geographic information. Population estimates were derived from the 2001 and 2006 censuses. Cancer cases were combined from 1998 to 2007 for Inuit Nunangat and the rest of Canada. Age-standardised incidence rates were calculated for all site cancers and sub-sites by sex. Standardised rate ratios between these 2 areas were calculated for all site cancers and sub-sites. The age-standardised incidence rate for all cancer sites (1998-2007) was 14% lower for the Inuit Nunangat male population and 29% higher for the female population by comparison to the rest of Canada. Cancers of the nasopharynx, lung and bronchus, colorectal, stomach (males), and kidney and renal pelvis (females), were elevated in the Inuit Nunangat population compared to the rest of Canada, whereas prostate and female breast cancers were lower in the Inuit Nunangat population. Cancers with potentially modifiable risk factors, such as buccal cavity and pharynx, nasopharynx, lung and bronchus, and colorectal cancer were elevated in the Inuit Nunangat population compared to the rest of Canada. Besides greater smoking prevalence within Inuit Nunangat by comparison to the rest of Canada, distinct socioeconomic characteristics between respective area populations including housing, and income may have contributed to incidence differentials. This study demonstrated that a geographic approach can be used in cancer surveillance when populations of interest are spatially distinguishable, and reside across distinct jurisdictions whose combined cancer registries will not completely provide information to identify the population of interest.

  18. The April 1992 and November 1992 radon intercomparisons at EML

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

    Fisenne, I.M.; George, A.C.; Perry, P.M.

    1993-07-01

    The Environmental Measurements Laboratory hosted two intercomparison exercises in Calendar Year 1992. Thirty-two groups, including US federal facilities, US Department of Energy`s Office of Health and Environmental Research contractors, national and state laboratories, and universities and foreign institutions, participated in these exercises. The majority of the participants` results were within {plus_minus}10% of the EML value at radon concentrations of 2075 and 1650 Bq m{sup {minus}3}.

  19. BioShaDock: a community driven bioinformatics shared Docker-based tools registry.

    PubMed

    Moreews, François; Sallou, Olivier; Ménager, Hervé; Le Bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

    2015-01-01

    Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

  20. BioShaDock: a community driven bioinformatics shared Docker-based tools registry

    PubMed Central

    Moreews, François; Sallou, Olivier; Ménager, Hervé; Le bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

    2015-01-01

    Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community. PMID:26913191

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

    PubMed

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

    2015-12-01

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

  2. 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.

  3. English Leadership Quarterly, 1992.

    ERIC Educational Resources Information Center

    Strickland, James, Ed.

    1992-01-01

    These four issues of the English Leadership Quarterly represent those published during 1992. Articles in number 1 deal with testing assessing, and measuring student performance, and include: "Real Evaluation: Portfolios as an Effective Alternative to Standardized Testing" (Kate Kiefer); "No More Objective Tests, Ever" (Carol…

  4. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry.

    PubMed

    Woodward, Len; Johnson, Sally; Walle, Johan Vande; Beck, Joran; Gasteyger, Christoph; Licht, Christoph; Ariceta, Gema

    2016-11-21

    Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease's natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS), the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183). The aHUS Registry Scientific Advisory Board (SAB) invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: "What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?". This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement between a patient advocacy group and an international research

  5. 16th IHIW: Global analysis of registry HLA haplotypes from 20 Million individuals: Report from the IHIW Registry Diversity Group

    PubMed Central

    Maiers, M; Gragert, L; Madbouly, A; Steiner, D; Marsh, S G E; Gourraud, P-A; Oudshoorn, M; Zanden, H; Schmidt, A H; Pingel, J; Hofmann, J; Müller, C; Eberhard, H-P

    2013-01-01

    This project has the goal to validate bioinformatics methods and tools for HLA haplotype frequency analysis specifically addressing unique issues of haematopoietic stem cell registry data sets. In addition to generating new methods and tools for the analysis of registry data sets, the intent is to produce a comprehensive analysis of HLA data from 20 million donors from the Bone Marrow Donors Worldwide (BMDW) database. This report summarizes the activity on this project as of the 16IHIW meeting in Liverpool. PMID:23280139

  6. 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

  7. 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.

  8. The trend of retinopathy of prematurity in Malaysia from 1992 to 2001 based on a nationwide blind schools study.

    PubMed

    Chang, Khai Meng; Patel, Dinesh Kumar; Tajunisah, Iqbal; Subrayan, Visvaraja

    2015-03-01

    Retinopathy of prematurity (ROP) is one of the most important causes of childhood blindness worldwide. The trend of ROP in Malaysia was unclear because there was no national registry before 2002. The purpose of this study is to analyze ROP students of different ages in the schools for the blind in Malaysia in order to evaluate the trend of ROP from 1992 to 2001. Data were obtained from a previous survey of 24 blind schools. It was found that 78 students or 17.4% were blind/severely visual impaired as a result of ROP. There was a significant surge in the number of ROP students who were born in 1994 when the use of synthetic surfactants was first introduced in Malaysia; otherwise there was no increasing trend in the number of students with ROP. However, the percentage of ROP in total was increasing, which indicates that ROP is becoming a more important cause of childhood blindness in this country. © 2012 APJPH.

  9. State Budget and Tax Actions 1992. Preliminary Report.

    ERIC Educational Resources Information Center

    Eckl, Corina L.; And Others

    This report discusses state general fund budgets in fiscal year 1992, tax actions in 1992, and the budget outlook for FY 1993. State government's fiscal outlook is as clouded as the national economy's, and conspicuous improvement is not expected in FY 1993. Year-end balances are nearly nonexistent for most states and will not recover significantly…

  10. 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

  11. Frequency and natural history of inherited bone marrow failure syndromes: the Israeli Inherited Bone Marrow Failure Registry.

    PubMed

    Tamary, Hannah; Nishri, Daniella; Yacobovich, Joanne; Zilber, Rama; Dgany, Orly; Krasnov, Tanya; Aviner, Shraga; Stepensky, Polina; Ravel-Vilk, Shoshana; Bitan, Menachem; Kaplinsky, Chaim; Ben Barak, Ayelet; Elhasid, Ronit; Kapelusnik, Joseph; Koren, Ariel; Levin, Carina; Attias, Dina; Laor, Ruth; Yaniv, Isaac; Rosenberg, Philip S; Alter, Blanche P

    2010-08-01

    Inherited bone marrow failure syndromes are rare genetic disorders characterized by bone marrow failure, congenital anomalies, and cancer predisposition. Available single disease registries provide reliable information regarding natural history, efficacy and side effects of treatments, and contribute to the discovery of the causative genes. However, these registries could not shed light on the true incidence of the various syndromes. We, therefore, established an Israeli national registry in order to investigate the relative frequency of each of these syndromes and their complications. Patients were registered by their hematologists in all 16 medical centers in Israel. We included patients with Fanconi anemia, severe congenital neutropenia, Diamond-Blackfan anemia, congenital amegakaryocytic thrombocytopenia, dyskeratosis congenita, Shwachman-Diamond syndrome, and thrombocytopenia with absent radii. One hundred and twenty-seven patients diagnosed between 1966 and 2007 were registered. Fifty-two percent were found to have Fanconi anemia, 17% severe congenital neutropenia, 14% Diamond-Blackfan anemia, 6% congenital amegakaryocytic thrombocytopenia, 5% dyskeratosis congenita, 2% Shwachman-Diamond syndrome, and 2% thrombocytopenia with absent radii. No specific diagnosis was made in only 2 patients. Of the thirty patients (24%) developing severe bone marrow failure, 80% had Fanconi anemia. Seven of 9 patients with leukemia had Fanconi anemia, as did all 6 with solid tumors. Thirty-four patients died from their disease; 25 (74%) had Fanconi anemia and 6 (17%) had severe congenital neutropenia. This is the first comprehensive population-based study evaluating the incidence and complications of the different inherited bone marrow failure syndromes. By far the most common disease was Fanconi anemia, followed by severe congenital neutropenia and Diamond-Blackfan anemia. Fanconi anemia carried the worst prognosis, with severe bone marrow failure and cancer susceptibility

  12. 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.

  13. Research Registries: A Tool to Advance Understanding of Rare Neuro-Ophthalmic Diseases

    PubMed Central

    Blankshain, Kimberly D; Moss, Heather E

    2016-01-01

    Background Medical research registries (MRR) are organized systems used to collect, store and analyze patient information. They are important tools for medical research with particular application to the study of rare diseases, including those seen in neuro-ophthalmic practice. Evidence Acquisition Evidence for this review was gathered from the writers’ experiences creating a comprehensive neuro-ophthalmology registry and review of the literature. Results MRR are typically observational and prospective databases of de-identified patient information. The structure is flexible and can accommodate a focus on specific diseases or treatments, surveillance of patient populations, physician quality improvement, or recruitment for future studies. They are particularly useful for the study of rare diseases. They can be integrated into the hierarchy of medical research at many levels provided their construction is well organized and they have several key characteristics including an easily manipulated database, comprehensive information on carefully selected patients and comply with human subjects regulations. MRR pertinent to neuro-ophthalmology include the UIC neuro-ophthalmology registry, Susac Syndrome Registry, Intracranial Hypertension Registry as well as larger scale patient outcome registries being developed by professional societies. Conclusion Medical research registries have a variety of forms and applications. With careful planning and clear goals, they are flexible and powerful research tools that can support multiple different study designs, and through this have the potential to advance understanding and care of neuro-ophthalmic diseases. PMID:27389624

  14. Real-world Outcomes of Multiple Myeloma: Retrospective Analysis of the Czech Registry of Monoclonal Gammopathies.

    PubMed

    Hájek, Roman; Jarkovsky, Jiri; Maisnar, Vladimír; Pour, Ludek; Špička, Ivan; Minařík, Jiri; Gregora, Evžen; Kessler, Petr; Sýkora, Michal; Fraňková, Hana; Campioni, Marco; DeCosta, Lucy; Treur, Maarten; Gonzalez-McQuire, Sebastian; Bouwmeester, Walter

    2018-06-01

    Real-world data on patient outcomes and treatment patterns in multiple myeloma (MM) are limited. The present noninterventional, observational, retrospective analysis of prospectively collected Czech patient medical record data from the Registry of Monoclonal Gammopathies estimated real-world outcomes in adults with a diagnosis of symptomatic MM made between May 2007 and June 2014. In total, 2446 patients had initiated first-line treatment. The median overall survival since the diagnosis (primary endpoint) was 50.3 months (95% confidence interval, 46.1-54.5 months) and decreased with each successive treatment line. A similar trend was observed for progression-free survival and the depth of response. In line with European guidelines and clinical practice, bortezomib-, thalidomide-, and lenalidomide-based regimens were most commonly used across all treatment lines (42.3%, 28.9%, and 18.4%, respectively). In the first line, bortezomib and thalidomide were used most often, with lenalidomide the most commonly used agent in the relapse setting (second to fourth lines). Exploratory analyses revealed that younger age (≤ 65 years), lower international staging system stage, and previous stem cell transplantation were associated with significant improvements in overall and progression-free survival, especially in the early treatment lines. The present study is the first analysis of Czech data from the Registry of Monoclonal Gammopathies, and it provides important insights into the real-world management of MM for physicians and healthcare providers. Copyright © 2018 Elsevier Inc. All rights reserved.

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

    PubMed

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

    2017-03-01

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

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

    PubMed

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

    2013-12-01

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

  17. United States, 2007 : hazardous materials : 2007 Economic Census : transportation : 2007 commodity flow survey

    DOT National Transportation Integrated Search

    2010-01-01

    As part of the shipment characteristics collected in the : 2007 CFS, we asked respondents to provide the four-digit : United Nations (UN) or North American (NA) identification : number. For the 2007 CFS data we used the UN/NA code : to: (1) identify ...

  18. Focal cryotherapy for localized prostate cancer: a report from the national Cryo On-Line Database (COLD) Registry.

    PubMed

    Ward, John F; Jones, J Stephen

    2012-06-01

    Study Type - Therapy (cohort) Level of Evidence 2b What's known on the subject? and What does the study add? Selective destruction of targeted prostate tissue is now technically feasible. Much has been theorized but little is known about the proper patient selection or treatment outcomes to determine if this organ preserving approach to prostate cancer has merit for further study and diffusion into wider practice. Herein we present the largest retrospective registry report of men treated with sub-total prostate cryotherapy in order to begin to understand how this treatment is being applied despite the paucity of data. •  To identify recent trends in focal cryotherapy from a prospectively maintained treatment registry. •  To describe treatment outcomes after uncontrolled application of focally ablative techniques within community practice. •  We conducted an analysis of the COLD Registry to identify patients treated with partial gland prostate cryoablation between 1997 and 2007. •  Preoperative characteristics and postoperative cancer-specific and functional outcomes were assembled for analysis. •  The COLD Registry contained information for 5853 patients and focal cryotherapy was the codified procedure in 1160 patients (19.8%). •  A dramatic increase in focal treatments was observed, from 46 in 1999 to 567 in 2005 (P < 0.01). •  The biochemical recurrence-free rate (ASTRO definition) at 36 months was 75.7%. •  Prostate biopsy, performed in 164/1160 of patients (14.1%), was positive in 43 (26.3%) of those suspected of cancer recurrence, but in only 3.7% (43/1160) of treated patients. •  Urinary continence (defined as use of 0 pads) was 98.4%. Maintenance of spontaneous erections was 58.1%. Prolonged urinary retention (>30 days) occurred in six (1.1%) patients. Rectourethral fistula was observed in one (0.1%) patient. •  Focal cryoablation is increasingly used for selected patients with prostate cancer. •  Oncological

  19. Reducing selection bias in case-control studies from rare disease registries.

    PubMed

    Cole, J Alexander; Taylor, John S; Hangartner, Thomas N; Weinreb, Neal J; Mistry, Pramod K; Khan, Aneal

    2011-09-12

    In clinical research of rare diseases, where small patient numbers and disease heterogeneity limit study design options, registries are a valuable resource for demographic and outcome information. However, in contrast to prospective, randomized clinical trials, the observational design of registries is prone to introduce selection bias and negatively impact the validity of data analyses. The objective of the study was to demonstrate the utility of case-control matching and the risk-set method in order to control bias in data from a rare disease registry. Data from the International Collaborative Gaucher Group (ICGG) Gaucher Registry were used as an example. A case-control matching analysis using the risk-set method was conducted to identify two groups of patients with type 1 Gaucher disease in the ICGG Gaucher Registry: patients with avascular osteonecrosis (AVN) and those without AVN. The frequency distributions of gender, decade of birth, treatment status, and splenectomy status were presented for cases and controls before and after matching. Odds ratios (and 95% confidence intervals) were calculated for each variable before and after matching. The application of case-control matching methodology results in cohorts of cases (i.e., patients with AVN) and controls (i.e., patients without AVN) who have comparable distributions for four common parameters used in subject selection: gender, year of birth (age), treatment status, and splenectomy status. Matching resulted in odds ratios of approximately 1.00, indicating no bias. We demonstrated bias in case-control selection in subjects from a prototype rare disease registry and used case-control matching to minimize this bias. Therefore, this approach appears useful to study cohorts of heterogeneous patients in rare disease registries.

  20. The trauma registry compared to All Patient Refined Diagnosis Groups (APR-DRG).

    PubMed

    Hackworth, Jodi; Askegard-Giesmann, Johanna; Rouse, Thomas; Benneyworth, Brian

    2017-05-01

    Literature has shown there are significant differences between administrative databases and clinical registry data. Our objective was to compare the identification of trauma patients using All Patient Refined Diagnosis Related Groups (APR-DRG) as compared to the Trauma Registry and estimate the effects of those discrepancies on utilization. Admitted pediatric patients from 1/2012-12/2013 were abstracted from the trauma registry. The patients were linked to corresponding administrative data using the Pediatric Health Information System database at a single children's hospital. APR-DRGs referencing trauma were used to identify trauma patients. We compared variables related to utilization and diagnosis to determine the level of agreement between the two datasets. There were 1942 trauma registry patients and 980 administrative records identified with trauma-specific APR-DRG during the study period. Forty-two percent (816/1942) of registry records had an associated trauma-specific APR-DRG; 69% of registry patients requiring ICU care had trauma APR-DRGs; 73% of registry patients with head injuries had trauma APR-DRGs. Only 21% of registry patients requiring surgical management had associated trauma APR-DRGs, and 12.5% of simple fractures had associated trauma APR-DRGs. APR-DRGs appeared to only capture a fraction of the entire trauma population and it tends to be the more severely ill patients. As a result, the administrative data was not able to accurately answer hospital or operating room utilization as well as specific information on diagnosis categories regarding trauma patients. APR-DRG administrative data should not be used as the only data source for evaluating the needs of a trauma program. Copyright © 2016 Elsevier Ltd. All rights reserved.

  1. 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

  2. Energy Information Administration quarterly coal report, October--December 1992

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

    Not Available

    1993-05-21

    The United States produced just over 1 billion short tons of coal in 1992, 0.4 percent more than in 1991. Most of the 4-million-short-ton increase in coal production occurred west of the Mississippi River, where a record level of 408 million short tons of coal was produced. The amount of coal received by domestic consumers in 1992 totaled 887 million short tons. This was 7 million short tons more than in 1991, primarily due to increased coal demand from electric utilities. The average price of delivered coal to each sector declined by about 2 percent. Coal consumption in 1992 wasmore » 893 million short tons, only 1 percent higher than in 1991, due primarily to a 1-percent increase in consumption at electric utility plants. Consumer coal stocks at the end of 1992 were 163 million short tons, a decrease of 3 percent from the level at the end of 1991, and the lowest year-end level since 1989. US coal exports fell 6 percent from the 1991 level to 103 million short tons in 1992. Less coal was exported to markets in Europe, Asia, and South America, but coal exports to Canada increased 4 million short tons.« less

  3. BioSWR – Semantic Web Services Registry for Bioinformatics

    PubMed Central

    Repchevsky, Dmitry; Gelpi, Josep Ll.

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118

  4. The Global Registry of Biodiversity Repositories: A Call for Community Curation

    PubMed Central

    Miller, Scott E.; Trizna, Michael G.; Graham, Eileen; Crane, Adele E.

    2016-01-01

    Abstract The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523

  5. The Global Registry of Biodiversity Repositories: A Call for Community Curation.

    PubMed

    Schindel, David E; Miller, Scott E; Trizna, Michael G; Graham, Eileen; Crane, Adele E

    2016-01-01

    The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource.

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

    PubMed

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

    2015-12-09

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

  7. NASA procurement report, FY 1992

    NASA Technical Reports Server (NTRS)

    1992-01-01

    This report presents summary data on all NASA procurement actions and detailed information on contracts, grants, agreements, and other procurements over $25,000 awarded by NASA during the first six months of Fiscal Year 1992. The dollar value on procurements over $25,000 amounted to 98 percent of the total dollar value of procurement actions completed during the first six months of Fiscal Year 1992. However, these larger procurements accounted for only 29 percent of the total actions. Procurement action, as used in this report, means contractual actions to obtain supplies, services, or construction which increase or decrease funds. A procurement action thus may be a new procurement, or modifications such as supplementary agreements, change orders, or terminations to a contract that change the total amount of funds obligated.

  8. Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research

    PubMed Central

    Rider, Lisa G.; Dankó, Katalin; Miller, Frederick W.

    2016-01-01

    Purpose of review Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers’ collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. Recent findings We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Summary Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways. PMID:25225838

  9. Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research.

    PubMed

    Rider, Lisa G; Dankó, Katalin; Miller, Frederick W

    2014-11-01

    Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers' collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here, we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.

  10. Inter-American Foundation: 1992 in Review, October 1, 1991 to September 30, 1992.

    ERIC Educational Resources Information Center

    Inter-American Foundation, Arlington, VA.

    This report summarizes 1992 activities of the Inter-American Foundation (IAF), an independent agency of the U.S. government. The IAF promotes equitable, responsive, and participatory approaches to sustainable development in Latin America and the Caribbean by awarding grants directly to local organizations. Funding is provided to grassroots…

  11. Trends in Study Methods Used in Undergraduate Medical Education Research, 1969–2007

    PubMed Central

    Baernstein, Amy; Liss, Hillary K.; Carney, Patricia A.; Elmore, Joann G.

    2011-01-01

    Context Evidence-based medical education requires rigorous studies appraising educational efficacy. Objectives To assess trends over time in methods used to evaluate undergraduate medical education interventions and to identify whether participation of medical education departments or centers is associated with more rigorous methods. Data Sources The PubMed, Cochrane Controlled Trials Registry, Campbell Collaboration, and ERIC databases (January 1966–March 2007) were searched using terms equivalent to students, medical and education, medical crossed with all relevant study designs. Study Selection We selected publications in all languages from every fifth year, plus the most recent 12 months, that evaluated an educational intervention for undergraduate medical students. Four hundred seventy-two publications met criteria for review. Data Extraction Data were abstracted on number of participants; types of comparison groups; whether outcomes assessed were objective, subjective, and/or validated; timing of outcome assessments; funding; and participation of medical education departments and centers. Ten percent of publications were independently abstracted by 2 authors to assess validity of the data abstraction. Results The annual number of publications increased over time from 1 (1969–1970) to 147 (2006–2007). In the most recent year, there was a mean of 145 medical student participants; 9 (6%) recruited participants from multiple institutions; 80 (54%) used comparison groups; 37 (25%) used randomized control groups; 91 (62%) had objective outcomes; 23 (16%) had validated outcomes; 35 (24%) assessed an outcome more than 1 month later; 21 (14%) estimated statistical power; and 66 (45%) reported funding. In 2006–2007, medical education department or center participation, reported in 46 (31%) of the recent publications, was associated only with enrolling more medical student participants (P = .04); for all studies from 1969 to 2007, it was associated only with

  12. METADATA REGISTRY, ISO/IEC 11179

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

    Pon, R K; Buttler, D J

    2008-01-03

    ISO/IEC-11179 is an international standard that documents the standardization and registration of metadata to make data understandable and shareable. This standardization and registration allows for easier locating, retrieving, and transmitting data from disparate databases. The standard defines the how metadata are conceptually modeled and how they are shared among parties, but does not define how data is physically represented as bits and bytes. The standard consists of six parts. Part 1 provides a high-level overview of the standard and defines the basic element of a metadata registry - a data element. Part 2 defines the procedures for registering classification schemesmore » and classifying administered items in a metadata registry (MDR). Part 3 specifies the structure of an MDR. Part 4 specifies requirements and recommendations for constructing definitions for data and metadata. Part 5 defines how administered items are named and identified. Part 6 defines how administered items are registered and assigned an identifier.« less

  13. 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.

  14. The 1992 NASA/ASEE Summer Faculty Fellowship Program

    NASA Technical Reports Server (NTRS)

    1992-01-01

    This is the administrative report for the 1992 NASA/ASEE Summer Faculty Fellowship Program which was held at the George C. Marshall Space Flight Center (MSFC) for the 28th consecutive year. The nominal starting and finishing dates for the ten week program were June 1, 1992 through August 7, 1992. The program was sponsored by NASA Headquarters, Washington, D.C., and operated under the auspices of the American Society for Engineering Education (ASEE). The program was one of eight such programs at eight NASA centers sponsored and funded by NASA Headquarters. The basic objectives of the program are the following: (1) to further the professional knowledge of qualified engineering and science faculty members; (2) to stimulate an exchange of ideas between participants and NASA; (3) to enrich and refresh the research and teaching activities at the participants' institutions; and (4) to contribute to the research objectives of the NASA centers. The major activities of the 1992 program were the following: (1) recruitment, selection, and assignment of faculty fellows; (2) research performed by the participants in collaboration with the MSFC colleague; (3) a seminar and tour program aimed at providing information concerning activities at MSFC; (4) an activities program of a social/non-technical nature aimed at providing the fellows and their families a means of learning about the MSFC/Huntsville area; and (5) preparation of a volume containing the written reports of the details of the research performed by each of the summer faculty. The success of the 1992 program activities in meeting the stated objectives was measured through questionnaires, which were filled out by participants and their MSFC colleagues. The following sections describe the major activities in more detail and the results of the questionnaires are summarized showing that the 1992 program was highly successful. This year's program also included 19 participants in the Summer Teacher Enrichment Program (STEP

  15. Contextual Predictors of Injection Drug Use Among Black Adolescents and Adults in US Metropolitan Areas, 1993–2007

    PubMed Central

    West, Brooke; Linton, Sabriya; Hunter-Jones, Josalin; Zlotorzynska, Maria; Stall, Ron; Wolfe, Mary E.; Williams, Leslie; Hall, H. Irene; Cleland, Charles; Tempalski, Barbara; Friedman, Samuel R.

    2016-01-01

    Objectives. We sought to determine whether contextual factors shape injection drug use among Black adolescents and adults. Methods. For this longitudinal study of 95 US metropolitan statistical areas (MSAs), we drew annual MSA-specific estimates of the prevalence of injection drug use (IDU) among Black adolescents and adults in 1993 through 2007 from 3 surveillance databases. We used existing administrative data to measure MSA-level socioeconomic status; criminal justice activities; expenditures on social welfare, health, and policing; and histories of Black uprisings (1960–1969) and urban renewal funding (1949–1974). We regressed Black IDU prevalence on these predictors by using hierarchical linear models. Results. Black IDU prevalence was lower in MSAs with declining Black high-school dropout rates, a history of Black uprisings, higher percentages of Black residents, and, in MSAs where 1992 White income was high, higher 1992 Black income. Incarceration rates were unrelated. Conclusions. Contextual factors shape patterns of drug use among Black individuals. Structural interventions, especially those that improve Black socioeconomic security and political strength, may help reduce IDU among Black adolescents and adults. PMID:26691126

  16. The Impact of Increasing Health Insurance Coverage on Disparities in Mortality: Health Care Reform in Colombia, 1998–2007

    PubMed Central

    Arroyave, Ivan; Cardona, Doris; Burdorf, Alex

    2013-01-01

    Objectives. We examined the impact of expanding health insurance coverage on socioeconomic disparities in total and cardiovascular disease mortality from 1998 to 2007 in Colombia. Methods. We used Poisson regression to analyze data from mortality registries (633 905 deaths) linked to population census data. We used the relative index of inequality to compare disparities in mortality by education between periods of moderate increase (1998–2002) and accelerated increase (2003–2007) in health insurance coverage. Results. Disparities in mortality by education widened over time. Among men, the relative index of inequality increased from 2.59 (95% confidence interval [CI] = 2.52, 2.67) in 1998–2002 to 3.07 (95% CI = 2.99, 3.15) in 2003–2007, and among women, from 2.86 (95% CI = 2.77, 2.95) to 3.12 (95% CI = 3.03, 3.21), respectively. Disparities increased yearly by 11% in men and 4% in women in 1998–2002, whereas they increased by 1% in men per year and remained stable among women in 2003–2007. Conclusions. Mortality disparities widened significantly less during the period of increased health insurance coverage than the period of no coverage change. Although expanding coverage did not eliminate disparities, it may contribute to curbing future widening of disparities. PMID:23327277

  17. Improving cancer control in the European Union: conclusions from the Lisbon round-table under the Portuguese EU Presidency, 2007.

    PubMed

    Gouveia, Joaquim; Coleman, Michel P; Haward, Robert; Zanetti, Roberto; Hakama, Matti; Borras, Josep Maria; Primic-Zakelj, Maja; de Koning, Harry J; Travado, Luzia

    2008-07-01

    Cancer is a major cause of morbidity and mortality in the European Union (EU), and a public health burden. Improving cancer control in the EU will require implementation of efficient strategies within Member States and better policy coordination between them. In cooperation between the rotating EU Presidencies of Germany (2007), Portugal (2007) and Slovenia (2008), special attention was devoted to an integrated approach to cancer control in EU policies and programmes. A round-table focussed on national cancer plans, population-based cancer registries and cancer screening programmes was held during the Health Strategies in Europe meeting in Lisbon in July 2007, under the Portuguese Presidency. These three topics were selected as critical for improving cancer control at both national and European levels. The round-table was designed to produce a set of recommendations to inform EU cancer policy. This paper provides a résumé of the conclusions and recommendations, to stimulate wider discussion and policy development. The conclusions of the meeting were presented at the Employment, Social Policy, Health and Consumer Affairs Council in December 2007 and cancer was included in the Council Conclusions for the new European Health Strategy. Success in cancer control will require consistent attention from future EU Presidencies, such as the initiative of the Slovenian EU Presidency in early 2008.

  18. Enhancing requirements engineering for patient registry software systems with evidence-based components.

    PubMed

    Lindoerfer, Doris; Mansmann, Ulrich

    2017-07-01

    Patient registries are instrumental for medical research. Often their structures are complex and their implementations use composite software systems to meet the wide spectrum of challenges. Commercial and open-source systems are available for registry implementation, but many research groups develop their own systems. Methodological approaches in the selection of software as well as the construction of proprietary systems are needed. We propose an evidence-based checklist, summarizing essential items for patient registry software systems (CIPROS), to accelerate the requirements engineering process. Requirements engineering activities for software systems follow traditional software requirements elicitation methods, general software requirements specification (SRS) templates, and standards. We performed a multistep procedure to develop a specific evidence-based CIPROS checklist: (1) A systematic literature review to build a comprehensive collection of technical concepts, (2) a qualitative content analysis to define a catalogue of relevant criteria, and (3) a checklist to construct a minimal appraisal standard. CIPROS is based on 64 publications and covers twelve sections with a total of 72 items. CIPROS also defines software requirements. Comparing CIPROS with traditional software requirements elicitation methods, SRS templates and standards show a broad consensus but differences in issues regarding registry-specific aspects. Using an evidence-based approach to requirements engineering for registry software adds aspects to the traditional methods and accelerates the software engineering process for registry software. The method we used to construct CIPROS serves as a potential template for creating evidence-based checklists in other fields. The CIPROS list supports developers in assessing requirements for existing systems and formulating requirements for their own systems, while strengthening the reporting of patient registry software system descriptions. It may be

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

    PubMed

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

    2016-01-01

    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). 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. 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. 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.

  20. Poro-elastic Rebound Along the Landers 1992 Earthquake Surface Rupture

    NASA Technical Reports Server (NTRS)

    Peltzer, G.; Rosen, P.; Rogez, F.; Hudnut, K.

    1998-01-01

    Maps of post-seismic surface displacement after the 1992, Landers, California earthquake, generated by interferometric processing of ERS-1 Synthetic Aperture Radar (SAR) images, reveal effects of various deformation processes near the 1992 surface rupture.

  1. Analysis of Existing Guidelines for the Systematic Planning Process of Clinical Registries.

    PubMed

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently.

  2. Characteristics and temporal trends in patient registries: focus on the life sciences industry, 1981–2012

    PubMed Central

    Travers, Karin; Sallum, Rachel H; Burns, Meghan D; Barr, Charles E; Beattie, Mary S; Pashos, Chris L; Luce, Bryan R

    2015-01-01

    Purpose Patient registries are used to monitor safety, examine real-world effectiveness, and may potentially contribute to comparative effectiveness research. To our knowledge, life sciences industry (LSI)-sponsored registries have not been systematically categorized. This study represents a first step toward understanding such registries over time. Methods Studies described as registries were identified in the ClinicalTrials.gov database. Characteristics from these registry records were abstracted and analyzed. Results Of 1202 registries identified, approximately 47% reported LSI sponsorship. These 562 LSI registries varied in focus: medical devices (n = 193, 34%), specific drugs (n = 173, 31%), procedures (n = 29, 5%), or particular diseases (n = 139, 25%). Thirty-three registries (<6%) evaluated pregnancy outcomes. The most common therapeutic area was cardiovascular (n = 234, 42%); others included endocrinology, immunology, oncology, musculoskeletal disorders, and neurology. The two most often measured outcomes were clinical effectiveness and safety, each of which appeared in 363/562 (65%) of LSI registries. Other outcomes included real-world clinical practice patterns (n = 122, 22%), patient-reported outcomes (n = 106, 19%), disease epidemiology/natural history (n = 69, 12%), and economic outcomes (n = 30, 5%). The number of LSI registries and their geographic diversity has increased over time. Conclusions The LSI registries represent a substantial proportion of all patient registries documented in ClinicalTrials.gov. These prospective studies are growing in number and encompass diverse therapeutic areas and geographic regions. Most registries measure multiple outcomes and capture real-world data that may be unavailable through other study designs. This classification of LSI registries documents their use for studying heterogeneity of diseases, examining treatment patterns, measuring patient-reported outcomes, examining economic outcomes, and performing

  3. EPA Facility Registry Service (FRS): CERCLIS

    EPA Pesticide Factsheets

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

  4. PS2007 Satellite Meeting on Photosynthetic Antennas, 19-22 July 2007, Drymen, Scotland

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

    Robert E. Blankenship

    2009-06-04

    A Satellite Workshop of the 14th International Congress on Photosynthesis on the topic of photosynthetic light-harvesting systems was held on 18-21 July 2007, at the Buchanan Arms Hotel in Drymen, Scotland, near Glasgow. This meeting continued the tradition of satellite light-harvesting conferences occurring prior to the last five international photosynthesis congresses in Japan, France, Hungary, Australia and Canada, dating from 1992. With an attendance of 124 participants, this Workshop represents an intimate gathering of scientists interested in a thorough coverage of the light-harvesting aspects of photosynthesis. A significant amount of time was set aside for discussion and poster sessions. Themore » organizers were: Richard J. Cogdell, UK (Chairperson), Alastair T. Gardiner, UK, Conrad W. Mullineaux, UK, Robert A. Niederman, USA, Robert E. Blankenship, USA, Harry Frank, USA, Bruno Robert, France. Sessions were focused on new concepts relating to the function, regulation, assembly, photoprotection and evolution of a wide variety of antenna systems. Cutting-edge scientific methods used to study these systems that were covered included time-resolved and single-molecule spectroscopy, structure determination by X-ray diffraction, NMR and electron and atomic force microscopy, molecular genetics, protein chemistry, model systems and theory. A central theme was how emerging high-resolution structural information on antenna proteins continues to provide an enhanced understanding of areas ranging from the kinetics of energy transfer processes to the assembly of the photosynthetic apparatus.« less

  5. Architecture for Variable Data Entry into a National Registry.

    PubMed

    Goossen, William

    2017-01-01

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

  6. Beating the downturn

    NASA Astrophysics Data System (ADS)

    2009-05-01

    Laser systems manufacturer Trumpf believes it can survive in the current economic climate with its strategy of diversification in both the laser technologies it is able to offer clients and the wide range of end-user applications that it serves. Nadya Anscombe finds out more.

  7. 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

  8. Explaining the decline in coronary heart disease mortality in the Czech Republic between 1985 and 2007.

    PubMed

    Bruthans, Jan; Cífková, Renata; Lánská, Věra; O'Flaherty, Martin; Critchley, Julia A; Holub, Jiří; Janský, Petr; Zvárová, Jana; Capewell, Simon

    2014-07-01

    Coronary heart disease (CHD) mortality has declined substantially in the Czech Republic over the last two decades. The purpose of this study was to determine what proportion of this CHD mortality decline could be associated with temporal trends in major CHD risk factors and what proportion with advances in medical and surgical treatments. The validated IMPACT mortality model was used to combine and analyse data on uptake and effectiveness of CHD management and risk factor trends in the Czech Republic in adults aged 25-74 years between 1985 and 2007. The main sources were official statistics, national quality of care registries, published trials and meta-analyses, and the Czech MONICA and Czech post-MONICA studies. Between 1985 and 2007, age-adjusted CHD mortality rates in the Czech Republic decreased by 66.2% in men and 65.4% in women in the age group 25-74 years, representing 12,080 fewer CHD deaths in 2007. Changes in CHD risk factors explained approximately 52% of the total mortality decrease, and improvements in medical treatments approximately 43%. Increases in body mass index and in diabetes prevalence had a negative impact, increasing CHD mortality by approximately 1% and 5%, respectively. More than half of the very substantial fall in CHD mortality in the Czech Republic between 1985 and 2007 was attributable to reduction in major cardiovascular risk factors. Improvement in treatments accounted for approximately 43% of the total mortality decrease. These findings emphasize the value of primary prevention and evidence-based medical treatment. © The European Society of Cardiology 2012.

  9. Bibliography of global change, 1992

    NASA Technical Reports Server (NTRS)

    1993-01-01

    This bibliography lists 585 reports, articles, and other documents introduced in the NASA Scientific and Technical Information Database in 1992. The areas covered include global change, decision making, earth observation (from space), forecasting, global warming, policies, and trends.

  10. Structural dynamics branch research and accomplishments to FY 1992

    NASA Technical Reports Server (NTRS)

    Lawrence, Charles

    1992-01-01

    This publication contains a collection of fiscal year 1992 research highlights from the Structural Dynamics Branch at NASA LeRC. Highlights from the branch's major work areas--Aeroelasticity, Vibration Control, Dynamic Systems, and Computational Structural Methods are included in the report as well as a listing of the fiscal year 1992 branch publications.

  11. [III Catalan registry of ST elevation acute myocardial infarction. Comparison with former Catalan registries I and II from Catalonia, Spain].

    PubMed

    Figueras, Jaume; Heras, Magda; Baigorri, Francisco; Elosua, Roberto; Ferreira, Ignacio; Santaló, Miquel

    2009-11-14

    To analyze the use of reperfusion therapy in patients with ST elevation myocardial infarction (STEMI) in Catalonia in a registry performed in 2006 (IAM CAT III) and its comparison with 2 previous registries Frequency of reperfusion therapy and time intervals between symptom onset - reperfusion therapy were the principal variables investigated. The IAM CAT I (June-December 2000) included 1,450 patients, the IAM CAT II (October 2002-April 2003) 1,386, and the IAM CAT III (October-December 2006) 367. The proportion of patients treated with reperfusion increased progressively (72%, 79% and 81%) as the use of primary angioplasty (5%, 10% and 33%). In the III registry the transfer system most frequently used was the SEM/061 (17%, 32% and 47%, respectively) but the time interval symptom onset-first contact with the medical system did not improve (II, 90 vs III, 105 min), the interval symptom onset-thrombolytic therapy did hardly change (178, 165 and 177 min) and the interval hospital arrival-trombolysis (needle-door) tended to improve (59, 42 and 42 min). Thirty day mortality in STEMI patients declined progressively through the 3 registries (12.1, 10.6 and 7.4%, p=0.012). The proportion of STEMI patients treated with reperfusion has improved but the interval to its application has not been shortened. To improve the latter it is mandatory an earlier contact with the medical system, a shortening of the intervals door-needle and door-balloon through better coordination between the 061, the sanitary personnel and the hospital administration, and to consider the subject as a real sanitary priority.

  12. 1992 NACUBO Endowment Study.

    ERIC Educational Resources Information Center

    National Association of College and University Business Officers, Washington, DC.

    This report presents the results of a 1992 study of the performance and management of college and university endowments. Part I offers succinct information on the data collection process, provides definitions, and explains the formula used in the analysis. Part II presents the report's exhibits in two sections. The first section describes: (1)…

  13. Creating an effective clinical registry for rare diseases

    PubMed Central

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

    2015-01-01

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

  14. 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

  15. An RDF version of the VO Registry Version 1.00

    NASA Astrophysics Data System (ADS)

    Gray, Norman; Gray, Norman

    2007-09-01

    We describe the initial implementation of an RDF version of the IVOA Resource Registry, serving the registry data via a SPARQL query endpoint, including the creation of the ontology analogues of an important subset of the relevant XML Schemas, and the mechanics of the conversion process. The result is an experimental service, and this is an interim document.

  16. Missing data in trauma registries: A systematic review.

    PubMed

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

    2018-03-30

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

  17. 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.

  18. 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

  19. PROCEEDINGS: THE 1992 GREENHOUSE GAS EMISSIONS AND MITIGATION RESEARCH SYMPOSIUM

    EPA Science Inventory

    The report documents the 1992 Greenhouse Gas Emissions and Mitigation Research Symposium held in Washington, DC, August 18-20, 1992. The symposium provided a forum for exchange of technical information on global change emissions and potential mitigation technologies. The primary ...

  20. Special Consolidated Checklists for Land Disposal Restrictions (unchanged since 1992)

    EPA Pesticide Factsheets

    This checklist consolidates LDR rules from the first rule promulgated on November 7, 1986 through June 30, 1992, including the Third Third Scheduled wastes (i.e., from Revision Checklist 34 through Revision Checklist 106, 57 FR 28628, June 26, 1992).

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

    PubMed

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

    2006-09-22

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

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

    PubMed Central

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

    2006-01-01

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

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

    PubMed

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

    2017-03-01

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

  4. Use of emergency medical service transport among patients with ST-segment-elevation myocardial infarction: findings from the National Cardiovascular Data Registry Acute Coronary Treatment Intervention Outcomes Network Registry-Get With The Guidelines.

    PubMed

    Mathews, Robin; Peterson, Eric D; Li, Shuang; Roe, Matthew T; Glickman, Seth W; Wiviott, Stephen D; Saucedo, Jorge F; Antman, Elliott M; Jacobs, Alice K; Wang, Tracy Y

    2011-07-12

    Activation of emergency medical services (EMS) is critical for the early triage and treatment of patients experiencing ST-segment-elevation myocardial infarction, yet data regarding EMS use and its association with subsequent clinical care are limited. We performed an observational analysis of 37 634 ST-segment-elevation myocardial infarction patients treated at 372 US hospitals participating in the National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get With the Guidelines between January 2007 and September 2009, and examined independent patient factors associated with EMS transportation versus patient self-transportation. We found that EMS transport was used in only 60% of ST-segment-elevation myocardial infarction patients. Older patients, those living farther from the hospital, and those with hemodynamic compromise were more likely to use EMS transport. In contrast, race, income, and education level did not appear to be associated with the mode of transport. Compared with self-transported patients, EMS-transported patients had significantly shorter delays in both symptom-onset-to-arrival time (median, 89 versus 120 minutes; P<0.0001) and door-to-reperfusion time (median door-to-balloon time, 63 versus 76 minutes; P<0.0001; median door-to-needle time, 23 versus 29 minutes; P<0.0001). Emergency medical services transportation to the hospital is underused among contemporary ST-segment-elevation myocardial infarction patients. Nevertheless, use of EMS transportation is associated with substantial reductions in ischemic time and treatment delays. Community education efforts are needed to improve the use of emergency transport as part of system-wide strategies to improve ST-segment-elevation myocardial infarction reperfusion care.

  5. Research Registries: A Tool to Advance Understanding of Rare Neuro-Ophthalmic Diseases.

    PubMed

    Blankshain, Kimberly D; Moss, Heather E

    2016-09-01

    Medical research registries (MRR) are organized systems used to collect, store, and analyze patient information. They are important tools for medical research with particular application to the study of rare diseases, including those seen in neuro-ophthalmic practice. Evidence for this review was gathered from the writers' experiences creating a comprehensive neuro-ophthalmology registry and review of the literature. MRR are typically observational and prospective databases of de-identified patient information. The structure is flexible and can accommodate a focus on specific diseases or treatments, surveillance of patient populations, physician quality improvement, or recruitment for future studies. They are particularly useful for the study of rare diseases. They can be integrated into the hierarchy of medical research at many levels provided their construction is well organized and they have several key characteristics including an easily manipulated database, comprehensive information on carefully selected patients, and comply with human subjects regulations. MRR pertinent to neuro-ophthalmology include the University of Illinois at Chicago neuro-ophthalmology registry, Susac Syndrome Registry, Intracranial Hypertension Registry, and larger-scale patient outcome registries being developed by professional societies. MRR have a variety of forms and applications. With careful planning and clear goals, they are flexible and powerful research tools that can support multiple different study designs, and this can provide the potential to advance understanding and care of neuro-ophthalmic diseases.

  6. Determinants of energy balance and overweight in Finland 1982 and 1992.

    PubMed

    Fogelholm, M; Männistö, S; Vartiainen, E; Pietinen, P

    1996-12-01

    To study the prevalence of overweight (BMI > 27 kg/m2) and major life-style determinants of energy balance in Finland, in 1982 and 1992. Cross-sectional study. 640 men and 677 women in 1982, and 664 men and 765 women 1992. BMI, dietary intake (3 d food record), physical activity and energy expenditure (self-administered questionnaire), data on smoking and educational status. The prevalence of overweight men was 39% in 1982 and 43% in 1992, and of women 33% and 34%, respectively. In 1992, the reported daily energy intake was 1203 kJ lower in men, and 711 kJ lower in women, compared with 1982 (P < 0.001). When suspected underreporters (energy intake less than 1.28 x BMR) were excluded, the decrease in reported energy intake was only 519 kJ (men) and 347 kJ (women) (P < 0.01). In 1992, the total physical activity level was 3.0% lower in men (P = 0.002), but only 0.6% lower in women (P = 0.18). Between 1982 and 1992, energy expenditure during work (P < 0.03) and during moving to and from work (P < 0.002) decreased. In contrast, energy expenditure during leisure-time exercise activity increased in men (+113 kJ/d) and in women (+146 kJ/d) (P < 0.001). Underreporting may explain a major part of the observed decrease in reported energy intake in 1992. The decreased energy expenditure during work was not counterbalanced by increased leisure-time physical exercise.

  7. [External evaluation of population-based cancer registries: the REDEPICAN Guide for Latin America].

    PubMed

    Navarro, Carmen; Molina, José Antonio; Barrios, Enrique; Izarzugaza, Isabel; Loria, Dora; Cueva, Patricia; Sánchez, María José; Chirlaque, María Dolores; Fernández, Leticia

    2013-11-01

    Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.

  8. 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

  9. Measuring hospital performance in congenital heart surgery: Administrative vs. clinical registry data

    PubMed Central

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

    2015-01-01

    Background In congenital heart surgery, hospital performance has historically been assessed using widely available administrative datasets. Recent studies have demonstrated inaccuracies in case ascertainment (coding and inclusion of eligible cases) in administrative vs. clinical registry data, however it is unclear whether this impacts assessment of performance on a hospital-level. Methods Merged data from the Society of Thoracic Surgeons (STS) Database (clinical registry), and Pediatric Health Information Systems Database (administrative dataset) on 46,056 children undergoing heart surgery (2006–2010) were utilized to evaluate in-hospital mortality for 33 hospitals based on their administrative vs. registry data. Standard methods to identify/classify cases were used: Risk Adjustment in Congenital Heart Surgery (RACHS-1) in the administrative data, and STS–European Association for Cardiothoracic Surgery (STAT) methodology in the registry. Results Median hospital surgical volume based on the registry data was 269 cases/yr; mortality was 2.9%. Hospital volumes and mortality rates based on the administrative data were on average 10.7% and 4.7% lower, respectively, although this varied widely across hospitals. Hospital rankings for mortality based on the administrative vs. registry data differed by ≥ 5 rank-positions for 24% of hospitals, with a change in mortality tertile classification (high, middle, or low mortality) for 18%, and change in statistical outlier classification for 12%. Higher volume/complexity hospitals were most impacted. Agency for Healthcare Quality and Research methods in the administrative data yielded similar results. Conclusions Inaccuracies in case ascertainment in administrative vs. clinical registry data can lead to important differences in assessment of hospital mortality rates for congenital heart surgery. PMID:25624057

  10. An international registry for primary ciliary dyskinesia.

    PubMed

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian; Raidt, Johanna; Wallmeier, Julia; Große-Onnebrink, Jörg; Kuehni, Claudia E; Haarman, Eric G; Leigh, Margaret W; Quittner, Alexandra L; Lucas, Jane S; Hogg, Claire; Witt, Michal; Priftis, Kostas N; Yiallouros, Panayiotis; Nielsen, Kim G; Santamaria, Francesca; Ückert, Frank; Omran, Heymut

    2016-03-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course.To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. Copyright ©ERS 2016.

  11. 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

  12. Analysis and visualization of disease courses in a semantically-enabled cancer registry.

    PubMed

    Esteban-Gil, Angel; Fernández-Breis, Jesualdo Tomás; Boeker, Martin

    2017-09-29

    Regional and epidemiological cancer registries are important for cancer research and the quality management of cancer treatment. Many technological solutions are available to collect and analyse data for cancer registries nowadays. However, the lack of a well-defined common semantic model is a problem when user-defined analyses and data linking to external resources are required. The objectives of this study are: (1) design of a semantic model for local cancer registries; (2) development of a semantically-enabled cancer registry based on this model; and (3) semantic exploitation of the cancer registry for analysing and visualising disease courses. Our proposal is based on our previous results and experience working with semantic technologies. Data stored in a cancer registry database were transformed into RDF employing a process driven by OWL ontologies. The semantic representation of the data was then processed to extract semantic patient profiles, which were exploited by means of SPARQL queries to identify groups of similar patients and to analyse the disease timelines of patients. Based on the requirements analysis, we have produced a draft of an ontology that models the semantics of a local cancer registry in a pragmatic extensible way. We have implemented a Semantic Web platform that allows transforming and storing data from cancer registries in RDF. This platform also permits users to formulate incremental user-defined queries through a graphical user interface. The query results can be displayed in several customisable ways. The complex disease timelines of individual patients can be clearly represented. Different events, e.g. different therapies and disease courses, are presented according to their temporal and causal relations. The presented platform is an example of the parallel development of ontologies and applications that take advantage of semantic web technologies in the medical field. The semantic structure of the representation renders it easy to

  13. 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.

  14. 78 FR 22886 - Agency Forms Undergoing Paperwork Reduction Act Review

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-04-17

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

  15. Cumulative Reports and Publications through December 31, 1992

    DTIC Science & Technology

    1993-04-01

    periodls of time , and by consultants. Members of NASA’s research staff also may be residenit at l( ASE for limited pieriodls. The major categories of the...To appear in Theoretical and Computational Fluid Dynamics. Nicol, David M.: Optimistic Barricr Synchronization . I(CASE Report No. 92-34, July 27, 1992...continuous time Markov chains. ICASE Report No. 92-60, November 18, 1992, 23 pages. Submitted to the 7th Annual Workshop on Parallel and Distributed

  16. 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

  17. 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.

  18. Understanding long-term protection of human papillomavirus vaccination against cervical carcinoma: Cancer registry-based follow-up.

    PubMed

    Rana, Muhammad Mohsin; Huhtala, Heini; Apter, Dan; Eriksson, Tiina; Luostarinen, Tapio; Natunen, Kari; Paavonen, Jorma; Pukkala, Eero; Lehtinen, Matti

    2013-06-15

    Phase III clinical trials of human papilloma virus (HPV) vaccination have shown ≥95% efficacy against HPV16/18 associated cervical intraepithelial neoplasia (CIN) Grade 2/3. Long-term surveillance is, however, needed to determine the overall vaccine efficacy (VE) against CIN3 and invasive cervical carcinoma (ICC). During population-based recruitment between September 2002 and March 2003, 1,749 16- to 17-year old Finns participated in a multi-national randomized Phase III HPV6/11/16/18 vaccine (FUTURE II) trial for the determination of VE against HPV16/18 positive CIN2/3. The passive follow-up started at the country-wide, population-based Finnish Cancer Registry (FCR) six months after the active follow-up and voluntary cross-vaccination in April 2007. A cluster randomized, population-based reference cohort of 15,744 unvaccinated, originally 18-19 year old Finns was established in two phases in 2003 and 2005 after the FUTURE II recruitment. We linked these cohorts with the FCR in 2007-2011 (HPV vaccine and placebo cohorts) and 2006-2010 and 2008-2012 (unvaccinated reference cohorts 1 and 2) to compare their incidences of CIN3 and ICC. The four years passive follow-up resulted in 3,464, 3,444 and 62,876 person years for the HPV6/11/16/18, original placebo and reference cohorts, after excluding cases discovered during the clinical follow-up and individuals not at risk. The numbers of CIN3 and ICC cases identified were 0 and 0, 3 and 0, 59 and 3 for the HPV6/11/16/18, placebo and the unvaccinated reference cohorts. The corresponding CIN3 incidence rates were 0/100,000 (95% confidence interval 0.0-106.5), 87.1/100,000 (95% CI 17.9-254.5) and 93.8/100,000 (95% CI 71.4-121), respectively. Long-term surveillance up to 8 years (and longer) post vaccination of the HPV6/11/16/18 vaccine and placebo cohorts, and the unvaccinated reference cohort (not exposed to interventions) for the most stringent efficacy end-points by passive cancer registry-based follow-up is feasible

  19. Pentagon Reservation Maintenance Revolving Fund Financial Statements - FY 1992

    DTIC Science & Technology

    1993-06-25

    3.2 million were reported. The Fund is resourced through direct appropriations and reimbursements from tenants of the Pentagon Reservation. For FY...and liabilities of $3.2 million. The Fund is resourced through direct appropriations and reimbursements from Fund property users. For FY 1992 the...Financial Statements - FY1992 4 Overview e. SizeofthePRMRF: Dollars expended: Building Operations Renovation Projects Tenant Reimbursable Total

  20. Promoting Organ Donor Registries Through Public Education: What Is the Cost of Securing Organ Donors?

    PubMed

    Razdan, Manik; Smith, Kenneth J; Bryce, Cindy L; Degenholtz, Howard B

    2016-06-01

    Transplant medicine's impact on America's public health is seriously limited by acute shortage of transplantable organs. Consequently, the United Sates has witnessed considerable investment in the promotion of organ donor registries. Although there is no evidence to support that donor registry promotion alleviates organ shortage, this belief continues to drive investments into registry promotion. In this study, return on investment in donor registry promotion was examined using cost-outcomes analysis. Cost of promoting the donor registry was estimated in US dollars whereas the outcome was measured as the number of individuals who join the registry (registrants) and their value in terms of organ donors. The study was conducted from the perspective of a regional Organ Procurement Organization (OPO). Costs were directly obtained from the OPO. The number of new registrants was obtained from the OPO and the departments of motor vehicles that maintain the donor registry. The value of registrants in terms of organ donors was computed based on a registrant's age-dependent risk of dying and age-dependent probability of becoming an organ donor. Six thousand seven hundred eight individuals joined the organ donor registry (95% confidence interval [95% CI], 5429-7956) at a cost of $455 per registrant (95% CI, US $383-US $562). These individuals result in 4.2 present-day donors (95% CI, 2.5-6.6) at a cost of US $726 000 (95% CI, US $462000-US $1.2 million). Because the cost per registrant and cost per donor is less than society's willingness to pay, donor registry promotion offers positive return on investment. Investment in registry promotion should at the minimum be maintained at current levels.

  1. The value of patient registries in advancing pediatric surgical care.

    PubMed

    Skarsgard, Erik D

    2018-05-01

    Pediatric surgeons treat a variety of conditions that are distinguished by their low occurrence rate, complexity, and need for integrated multidisciplinary care. Although randomized controlled trials (RCTs) are considered the gold standard for generating evidence to inform best practice, they are poorly suited to rare diseases based on the variability of illness severity, unpredictability in clinical course, and the impact limitations of studying a single intervention at a time. An alternative to RCTs for comparative effectiveness research for rare diseases in pediatric surgery is the patient registry, which collects detailed and condition-specific patient level data related to illness severity, treatment, and outcome, and allows a large, disease-specific database to be created for the dual purposes of collaborative research and quality improvement across participating sites. This review discusses the various functions of a patient registry in fulfilling its mandate of evidence-based practice and outcome improvement using examples from a variety of existing pediatric surgical registries. The value proposition of patient registries as sources of knowledge, facilitators of practice standardization, and enablers of continuous quality improvement is discussed. Copyright © 2018 Elsevier Inc. All rights reserved.

  2. Annual report to Congress, FY 1992

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

    NONE

    1993-07-01

    The Office of Civilian Radioactive Waste Management (OCRWM) is responsible for disposing of the Nation`s spent nuclear fuel from civilian nuclear power reactors and high-level radioactive waste from its defense activities in a cost-effective manner that protects the health and safety of the public and workers and the quality of the environment. To accomplish this mission OCRWM is developing a waste management system consisting of a geologic repository, a facility for monitored retrievable storage, and a system for transporting the waste. This is the ninth annual report submitted by the OCRWM to Congress. The OCRWM submits this report to informmore » Congress of its activities and expenditures during fiscal year 1992 (October 1, 1991 through September 30, 1992).« less

  3. Southern pulpwood production, 1992

    Treesearch

    Patrick E. Miller

    1994-01-01

    In 1992, southern pulpwood production increased 4 percent to 67.9 million cords. Roundwood production increased 1 percent to 47.3 million cords, and wood residue production increased 12 percent to 20.7 million cords. One pulpmill changed processes, reducing the number to 103. The pulping capacity of the 103 southern pulpmills was 133,400 tons per day. No new...

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

    PubMed

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

    2011-12-21

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

  5. 1992 census of transportation, communications, and utilities : nonemployer statistic series summary

    DOT National Transportation Integrated Search

    1995-04-01

    The 1992 Census of Transportation, Communications, : and Utilities for the first time collected data for the communications, : electric, gas, and sanitary service industries. : In addition, the 1992 census expanded coverage of transportation : indust...

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

    PubMed

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

    2015-03-01

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

  7. 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

  8. Inflammatory bowel disease registries for collection of patient iron parameters in Europe

    PubMed Central

    Halfvarson, Jonas; Cummings, Fraser; Grip, Olof; Savoye, Guillaume

    2018-01-01

    Iron deficiency without anemia and iron deficiency anemia are common and frequently overlooked complications of inflammatory bowel disease. Despite the frequency and impact of iron deficiency in inflammatory bowel disease, there are gaps in our understanding about its incidence, prevalence and natural history and, consequently, patients may be undertreated. Medical registries have a key role in collecting data on the disease’s natural history, the safety and effectiveness of drugs in routine clinical practice, and the quality of care delivered by healthcare services. Even though iron deficiency impacts inflammatory bowel disease patients and healthcare systems substantially, none of the established European inflammatory bowel disease registries systematically collects information on iron parameters and related outcomes. Collection of robust iron parameter data from patient registries is one way to heighten awareness about the importance of iron deficiency in this disease and to generate data to improve the quality of patient care, patient outcomes, and thus quality of life. This objective could be achieved through collection of specific laboratory, clinical, and patient-reported measurements that could be incorporated into existing registries. This review describes the status of current European inflammatory bowel disease registries and the data they generate, in order to highlight their potential role in collecting iron data, to discuss how such information gathering could contribute to our understanding of iron deficiency anemia, and to provide practical information in regard to the incorporation of accumulated iron parameter data into registries. PMID:29563751

  9. 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.

  10. Altitude, age, and quality of groundwater, Papio-Missouri River Natural Resources District, eastern Nebraska, 1992 to 2009

    USGS Publications Warehouse

    McGuire, Virginia L.; Ryter, Derek W.; Flynn, Amanda S.

    2012-01-01

    predominant water type was calcium bicarbonate. Samples from 4 wells exceeded the U.S. Environmental Protection Agency (USEPA) Secondary Drinking Water Regulation (SDWR) for sulfate [250 milligrams per liter (mg/L)], and samples from 4 wells exceeded the USEPA Drinking Water Advisory Table for sodium (30-60 mg/L). Eighteen of the 21 trace elements analyzed in samples from PMRNRD wells have USEPA drinking-water standards. Sixteen of the trace elements with USEPA standards were detected in the selected samples. In the samples selected for trace-element analysis, the only trace-element concentration that exceeded an enforceable USEPA drinking-water standard, the Maximum Contaminant Level (MCL), was for arsenic; arsenic concentration exceeded the USEPA MCL of 10 micrograms per liter (μg/L) in 4 percent of the samples. Trace-element concentrations that exceeded the USEPA SDWR or Lifetime Health Advisory level were iron (46 percent of the samples were greater than USEPA SDWR of 300 μg/L), manganese (70 percent of the samples were greater than USEPA SDWR of 50 μg/L), and strontium (4 percent of the samples were greater than USEPA Lifetime Health Advisory level of 4,000 μ/L). The concentration of nitrate plus nitrite as nitrogen (nitrate-N) in the most recent nutrient samples collected from the network wells and from one randomly selected well in the well nests from 1992 to 2009 for most wells (80 percent) ranged from less than 0.06 to 8.55 mg/L, with a median value of 0.12 mg/L. Concentrations of nitrate-N in 13 (7 percent) nutrient samples, 1992 to 2009, were greater than or equal to the USEPA MCL and Nebraska Title-118 standard of 10 mg/L, and concentrations of nitrate-N in 35 (18 percent) nutrient samples, 1992 to 2009, were greater than or equal to 5 mg/L, which is the PMRNRD action level for possible management implementation to reduce nitrate concentrations in groundwater. Of the 61 pesticides or pesticide degradates analyzed from 2007 to 2009, 21 were detected. Three of

  11. 1992 census of transportation, communications, and utilities : geographic area series summary

    DOT National Transportation Integrated Search

    1995-03-01

    The 1992 Census of Transportation, Communications, and Utilities for the first time collected data for the communications, electric, gas, and sanitary service industries. In addition, the 1992 census expanded coverage of transportation industries to ...

  12. Testing Electronic Algorithms to Create Disease Registries in a Safety Net System

    PubMed Central

    Hanratty, Rebecca; Estacio, Raymond O.; Dickinson, L. Miriam; Chandramouli, Vijayalaxmi; Steiner, John F.; Havranek, Edward P.

    2008-01-01

    Electronic disease registries are a critical feature of the chronic disease management programs that are used to improve the care of individuals with chronic illnesses. These registries have been developed primarily in managed care settings; use in safety net institutions—organizations whose mission is to serve the uninsured and underserved—has not been described. We sought to assess the feasibility of developing disease registries from electronic data in a safety net institution, focusing on hypertension because of its importance in minority populations. We compared diagnoses obtained from algorithms utilizing electronic data, including laboratory and pharmacy records, against diagnoses derived from chart review. We found good concordance between diagnoses identified from electronic data and those identified by chart review, suggesting that registries of patients with chronic diseases can be developed outside the setting of closed panel managed care organizations. PMID:18469416

  13. Explaining trends in coronary heart disease mortality in different socioeconomic groups in Denmark 1991-2007 using the IMPACTSEC model.

    PubMed

    Joensen, Albert Marni; Joergensen, Torben; Lundbye-Christensen, Søren; Johansen, Martin Berg; Guzman-Castillo, Maria; Bandosz, Piotr; Hallas, Jesper; Prescott, Eva Irene Bossano; Capewell, Simon; O'Flaherty, Martin

    2018-01-01

    To quantify the contribution of changes in different risk factors population levels and treatment uptake on the decline in CHD mortality in Denmark from 1991 to 2007 in different socioeconomic groups. We used IMPACTSEC, a previously validated policy model using data from different population registries. All adults aged 25-84 years living in Denmark in 1991 and 2007. Deaths prevented or postponed (DPP). There were approximately 11,000 fewer CHD deaths in Denmark in 2007 than would be expected if the 1991 mortality rates had persisted. Higher mortality rates were observed in the lowest socioeconomic quintile. The highest absolute reduction in CHD mortality was seen in this group but the highest relative reduction was in the most affluent socioeconomic quintile. Overall, the IMPACTSEC model explained nearly two thirds of the decline in. Improved treatments accounted for approximately 25% with the least relative mortality reduction in the most deprived quintile. Risk factor improvements accounted for approximately 40% of the mortality decrease with similar gains across all socio-economic groups. The 36% gap in explaining all DPPs may reflect inaccurate data or risk factors not quantified in the current model. According to the IMPACTSEC model, the largest contribution to the CHD mortality decline in Denmark from 1991 to 2007 was from improvements in risk factors, with similar gains across all socio-economic groups. However, we found a clear socioeconomic trend for the treatment contribution favouring the most affluent groups.

  14. Metrication report to the Congress. 1991 activities and 1992 plans

    NASA Technical Reports Server (NTRS)

    1991-01-01

    During 1991, NASA approved a revised metric use policy and developed a NASA Metric Transition Plan. This Plan targets the end of 1995 for completion of NASA's metric initiatives. This Plan also identifies future programs that NASA anticipates will use the metric system of measurement. Field installations began metric transition studies in 1991 and will complete them in 1992. Half of NASA's Space Shuttle payloads for 1991, and almost all such payloads for 1992, have some metric-based elements. In 1992, NASA will begin assessing requirements for space-quality piece parts fabricated to U.S. metric standards, leading to development and qualification of high priority parts.

  15. 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.

  16. Cancer Incidence and Survival Trends by Subtype Using Data from the Surveillance Epidemiology and End Results Program, 1992-2013.

    PubMed

    Noone, Anne-Michelle; Cronin, Kathleen A; Altekruse, Sean F; Howlader, Nadia; Lewis, Denise R; Petkov, Valentina I; Penberthy, Lynne

    2017-04-01

    Background: Cancers are heterogeneous, comprising distinct tumor subtypes. Therefore, presenting the burden of cancer in the population and trends over time by these tumor subtypes is important to identify patterns and differences in the occurrence of these subtypes, especially to generalize findings to the U.S. general population. Methods: Using SEER Cancer Registry Data, we present incidence rates according to subtypes for diagnosis years (1992-2013) among men and women for five major cancer sites: breast (female only), esophagus, kidney and renal pelvis, lung and bronchus, and thyroid. We also describe estimates of 5-year relative survival according to subtypes and diagnosis year (1992-2008). We used Joinpoint models to identify years when incidence rate trends changed slope. Finally, recent 5-year age-adjusted incidence rates (2009-2013) are presented for each subtype by race and age. Results: Hormone receptor-positive and HER2-negative was the most common subtype (about 74%) of breast cancers. Adenocarcinoma made up about 69% of esophagus cases among men. Adenocarcinoma also is the most common lung subtype (43% in men and 52% in women). Ninety percent of thyroid subtypes were papillary. Distinct incidence and survival patterns emerged by these subtypes over time among men and women. Conclusions: Histologic or molecular subtype revealed different incidence and/or survival trends that are masked when cancer is considered as a single disease on the basis of anatomic site. Impact: Presenting incidence and survival trends by subtype, whenever possible, is critical to provide more detailed and meaningful data to patients, providers, and the public. Cancer Epidemiol Biomarkers Prev; 26(4); 632-41. ©2016 AACR . ©2016 American Association for Cancer Research.

  17. 1992 Michigan traffic crash facts

    DOT National Transportation Integrated Search

    1994-07-19

    The 1992 traffic fatality count was 1,300, down 8.8 percent from the 1991 figure of : 1,425. Compared with 1991, injuries were down 12.6 percent and total crashes : were down 5.5 percent. These figures translated into a death rate of 1.5 per 100 : mi...

  18. Revista Investigacion Educativa, 1992-1995.

    ERIC Educational Resources Information Center

    Revista Investigacion Educativa, 1995

    1995-01-01

    This document consists of the eight issues of the series "Revista Investigacion Educativa" published during the 4-year period 1992-1995. This review of educational investigation seeks to promote the exchange of information about empirical research in education. It is published semiannually, and includes reports of both quantitative and…

  19. A practical framework for data management processes and their evaluation in population-based medical registries.

    PubMed

    Sariyar, M; Borg, A; Heidinger, O; Pommerening, K

    2013-03-01

    We present a framework for data management processes in population-based medical registries. Existing guidelines lack the concreteness we deem necessary for them to be of practical use, especially concerning the establishment of new registries. Therefore, we propose adjustments and concretisations with regard to data quality, data privacy, data security and registry purposes. First, we separately elaborate on the issues to be included into the framework and present proposals for their improvements. Thereafter, we provide a framework for medical registries based on quasi-standard-operation procedures. The main result is a concise and scientifically based framework that tries to be both broad and concrete. Within that framework, we distinguish between data acquisition, data storage and data presentation as sub-headings. We use the framework to categorise and evaluate the data management processes of a German cancer registry. The standardisation of data management processes in medical registries is important to guarantee high quality of the registered data, to enhance the realisation of purposes, to increase efficiency and to enable comparisons between registries. Our framework is destined to show how one central impediment for such standardisations - lack of practicality - can be addressed on scientific grounds.

  20. Hanford Site Environmental Report for calendar year 1992

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

    Woodruff, R.K.; Hanf, R.W.; Lundgren, R.E.

    1993-06-01

    This report is prepared annually to summarize environmental data and information, describe environmental management performance, and demonstrate the status of compliance with environmental regulations at the Hanford Site. The following sections: describe the Hanford Site and its mission; summarize the status in 1992 of compliance with environmental regulations; describe the environmental programs at the Hanford Site; discuss public dose estimates from 1992 Hanford activities; present information on effluent monitoring and environmental surveillance, including ground-water protection and monitoring, and discuss activities to ensure quality.

  1. H-Area Seepage Basins groundwater monitoring report. Fourth quarter 1992 and 1992 summary

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

    Not Available

    1993-03-01

    During fourth quarter 1992, the groundwater at the H-Area Seepage Basins (HASB) was monitored in compliance with South Carolina Hazardous Waste Management Regulations, R61-79.265, Subpart F. Samples were collected from 130 wells that monitor the three separate hydrostratigraphic units that make up the uppermost aquifer beneath the HASB. A detailed description of the uppermost aquifer is included in the Resource Conservation and Recovery Act Part B Post-Closure Care Permit Application for the H-Area Hazardous Waste Management Facility submitted to the South Carolina Department of Health and Environmental Control in December 1990. Historically, as well as currently, tritium, nitrate, total alpha-emittingmore » radium, gross alpha, and mercury have been the primary constituents observed above final Primary Drinking Water Standards (PDWS) in groundwater at the HASB. Isoconcentration/isoactivity maps included in this report indicate both the concentration/activity and extent of the primary contaminants in each of the three hydrostratigraphic units during first and fourth quarter 1992. Water-level maps indicate that the groundwater flow rates and directions at the HASB have remained relatively constant since the basins ceased to be active in 1988.« less

  2. Cancer patterns in Inuit Nunangat: 1998–2007

    PubMed Central

    Carrière, Gisèle M.; Tjepkema, Michael; Pennock, Jennifer; Goedhuis, Neil

    2012-01-01

    Objectives To compare cancer incidence patterns between residents of Inuit Nunangat and the rest of Canada. Study design Cancer cases were geographically linked to either Inuit Nunangat or the rest of Canada using postal codes or other geographic information. Population estimates were derived from the 2001 and 2006 censuses. Methods Cancer cases were combined from 1998 to 2007 for Inuit Nunangat and the rest of Canada. Age-standardised incidence rates were calculated for all site cancers and sub-sites by sex. Standardised rate ratios between these 2 areas were calculated for all site cancers and sub-sites. Results The age-standardised incidence rate for all cancer sites (1998–2007) was 14% lower for the Inuit Nunangat male population and 29% higher for the female population by comparison to the rest of Canada. Cancers of the nasopharynx, lung and bronchus, colorectal, stomach (males), and kidney and renal pelvis (females), were elevated in the Inuit Nunangat population compared to the rest of Canada, whereas prostate and female breast cancers were lower in the Inuit Nunangat population. Conclusions Cancers with potentially modifiable risk factors, such as buccal cavity and pharynx, nasopharynx, lung and bronchus, and colorectal cancer were elevated in the Inuit Nunangat population compared to the rest of Canada. Besides greater smoking prevalence within Inuit Nunangat by comparison to the rest of Canada, distinct socioeconomic characteristics between respective area populations including housing, and income may have contributed to incidence differentials. This study demonstrated that a geographic approach can be used in cancer surveillance when populations of interest are spatially distinguishable, and reside across distinct jurisdictions whose combined cancer registries will not completely provide information to identify the population of interest. PMID:22663938

  3. Patterns and Trends of Liver Cancer Incidence Rates in Eastern and Southeastern Asian Countries (1983-2007) and Predictions to 2030.

    PubMed

    Wu, Jie; Yang, Shigui; Xu, Kaijin; Ding, Cheng; Zhou, Yuqing; Fu, Xiaofang; Li, Yiping; Deng, Min; Wang, Chencheng; Liu, Xiaoxiao; Li, Lanjuan

    2018-05-01

    We examined temporal trends in liver cancer incidence rates overall and by histological type from 1983 through 2007. We predict trends in liver cancer incidence rates through 2030 for selected Eastern and Southeastern Asian countries. Data on yearly liver cancer incident cases by age group and sex were drawn from 6 major selected Eastern and Southeastern Asian countries or regions with cancer registries available in the CI5plus database, including China, Japan, Hong Kong Special Administrative Region (SAR), the Philippines, Singapore, and Thailand. We also analyzed data for the United States and Australia for comparative purposes. Age-standardized incidence rates were calculated and plotted from 1983 through 2007. Numbers of new cases and incidence rates were predicted through 2030 by fitting and extrapolating age-period-cohort models. The incidence rates of liver cancer have been decreasing, and decreases will continue in all selected Eastern and Southeastern Asian countries, except for Thailand, whose liver cancer incidence rate will increase due to the increasing incidence rate of intrahepatic cholangiocarcinomas. Even though the incidence rates of liver cancer are predicted to decrease in most Eastern and Southeastern Asian countries, the burden, in terms of new cases, will continue to increase because of population growth and aging. Based on an analysis of data from cancer registries from Asian countries, incidence rates of liver cancer are expected to decrease through 2030 in most Eastern and Southeastern Asian countries. However, in Thailand, the incidence rate of intrahepatic cholangiocarcinomas is predicted to increase, so health education programs are necessary. Copyright © 2018 AGA Institute. Published by Elsevier Inc. All rights reserved.

  4. 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...

  5. Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data.

    PubMed

    Chaturvedi, Meesha; Vaitheeswaran, K; Satishkumar, K; Das, Priyanka; Stephen, S; Nandakumar, A

    2015-12-01

    The trends observed in cancer breast among Indian women are an indication of effect of changing lifestyle in population. To draw an appropriate inference regarding the trends of a particular type of cancer in a country, it is imperative to glance at the reliable data collected by Population Based Cancer Registries over a period of time. To give an insight of changing trends of breast cancer which have taken place over a period of time among women in Cancer Registries of India. Breast Cancer trends for invasive breast cancer in women in Indian Registries have varied during the selected period. Occurrence of breast cancers has also shown geographical variation in India. This data was collected by means of a 'Standard Core Proforma' designed by NCRP conforming to the data fields as suggested by International norms. The Proforma was filled by trained Registry workers based on interview/ hospital medical records/ supplementing data by inputs from treating surgeons/radiation oncologists/involved physicians/pathologists. The contents of the Proforma are entered into specifically created software and transmitted electronically to the coordinating center at Bangalore. The registries contributing to more number of years of data are called as older registries, while other recently established registries are called newer registries. While there has been an increase recorded in breast cancer in most of the registries, some of them have recorded an insignificant increase. Comparison of Age Adjusted Rates (AARs) among Indian Registries has been carried out after which trends observed in populations covered by Indian Registries are depicted. A variation in broad age groups of females and the proneness of females developing breast cancer over the period 1982 to 2010 has been shown. Comparisons of Indian registries with International counterparts have also been carried out. There are marked changes in incidence rates of cancer breast which have occurred in respective registries in a

  6. Melanoma incidence rates in active duty military personnel compared with a population-based registry in the United States, 2000-2007.

    PubMed

    Lea, C Suzanne; Efird, Jimmy T; Toland, Amanda E; Lewis, Denise R; Phillips, Christopher J

    2014-03-01

    This study was conducted to investigate whether incidence rates of malignant cutaneous melanoma in U.S. Department of Defense active duty military personnel differed from rates in the U.S. general population between 2000 and 2007. The study population included active duty military personnel and the general population aged 18 to 56 years. Data were obtained from the U.S. Department of Defense medical data systems and from the Surveillance Epidemiology and End Results program. Melanoma risk was estimated by incidence rate ratios (IRRs). Melanoma risk was higher among active duty personnel than the general population (IRR = 1.62, 95% confidence interval = 1.40-1.86). Incidence rates were higher for white military personnel than for white rates in general population (36.89 and 23.05 per 100,000 person-years, respectively). Rates were also increased for military men and women compared with SEER (men, 25.32 and 16.53 per 100,000; women, 30.00 and 17.55 per 100,000). Air Force service personnel had the highest rates and Army had the lowest. Melanoma rates were marginally higher among active duty military personnel than the general population between 2000 and 2007. Reprint & Copyright © 2014 Association of Military Surgeons of the U.S.

  7. 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...

  8. 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...

  9. Trends in Childhood Leukemia in Basrah, Iraq, 1993–2007

    PubMed Central

    Lafta, Riyadh; Hassan, Jenan; Davis, Scott; Mirick, Dana; Takaro, Tim

    2010-01-01

    Objectives. Through a sister-university relationship between the University of Basrah and the University of Washington, we analyzed Ibn Ghazwan Hospital's leukemia registry data to evaluate trends in childhood leukemia since 1993. Methods. We documented leukemia cases among children aged 0 to 14 years for each of the last 15 years. Population data were obtained from a 1997 census and various subsequent estimates to calculate rates. Results. We observed 698 cases of childhood leukemia between 1993 and 2007, ranging between 15 cases (2.6 per 100 000 annual rate) in the first year and 56 cases (6.9 per 100 000 annual rate) in the final year, reaching a peak of 97 cases in 2006 (12.2 per 100 000 annual rate). Conclusions. Childhood leukemia rates in Basrah more than doubled over a 15-year period. The test for trend was significant (P = .03). Basrah's childhood leukemia rate compared unfavorably with neighboring Kuwait and nearby Oman, as well as the United States, the European Union, and other countries. PMID:20167894

  10. The German Aortic Valve Registry (GARY): in-hospital outcome

    PubMed Central

    Hamm, Christian W.; Möllmann, Helge; Holzhey, David; Beckmann, Andreas; Veit, Christof; Figulla, Hans-Reiner; Cremer, J.; Kuck, Karl-Heinz; Lange, Rüdiger; Zahn, Ralf; Sack, Stefan; Schuler, Gerhard; Walther, Thomas; Beyersdorf, Friedhelm; Böhm, Michael; Heusch, Gerd; Funkat, Anne-Kathrin; Meinertz, Thomas; Neumann, Till; Papoutsis, Konstantinos; Schneider, Steffen; Welz, Armin; Mohr, Friedrich W.

    2014-01-01

    Background Aortic stenosis is a frequent valvular disease especially in elderly patients. Catheter-based valve implantation has emerged as a valuable treatment approach for these patients being either at very high risk for conventional surgery or even deemed inoperable. The German Aortic Valve Registry (GARY) provides data on conventional and catheter-based aortic procedures on an all-comers basis. Methods and results A total of 13 860 consecutive patients undergoing repair for aortic valve disease [conventional surgery and transvascular (TV) or transapical (TA) catheter-based techniques] have been enrolled in this registry during 2011 and baseline, procedural, and outcome data have been acquired. The registry summarizes the results of 6523 conventional aortic valve replacements without (AVR) and 3464 with concomitant coronary bypass surgery (AVR + CABG) as well as 2695 TV AVI and 1181 TA interventions (TA AVI). Patients undergoing catheter-based techniques were significantly older and had higher risk profiles. The stroke rate was low in all groups with 1.3% (AVR), 1.9% (AVR + CABG), 1.7% (TV AVI), and 2.3% (TA AVI). The in-hospital mortality was 2.1% (AVR) and 4.5% (AVR + CABG) for patients undergoing conventional surgery, and 5.1% (TV AVI) and AVI 7.7% (TA AVI). Conclusion The in-hospital outcome results of this registry show that conventional surgery yields excellent results in all risk groups and that catheter-based aortic valve replacements is an alternative to conventional surgery in high risk and elderly patients. PMID:24022003

  11. Creation of an international registry to support discovery in schwannomatosis.

    PubMed

    Ostrow, K L; Bergner, A L; Blakeley, J; Evans, D G; Ferner, R; Friedman, J M; Harris, G J; Jordan, J T; Korf, B; Langmead, S; Leschziner, G; Mautner, V; Merker, V L; Papi, L; Plotkin, S R; Slopis, J M; Smith, M J; Stemmer-Rachamimov, A; Yohay, K; Belzberg, A J

    2017-02-01

    Schwannomatosis is a tumor suppressor syndrome that causes multiple tumors along peripheral nerves. Formal diagnostic criteria were first published in 2005. Variability in clinical presentation and a relative lack of awareness of the syndrome have contributed to difficulty recognizing affected individuals and accurately describing the natural history of the disorder. Many critical questions such as the mutations underlying schwannomatosis, genotype-phenotype correlations, inheritance patterns, pathologic diagnosis of schwannomatosis-associated schwannomas, tumor burden in schwannomatosis, the incidence of malignancy, and the effectiveness of current, or new treatments remain unanswered. A well-curated registry of schwannomatosis patients is needed to facilitate research in field. An international consortium of clinicians and scientists across multiple disciplines with expertise in schwannomatosis was established and charged with the task of designing and populating a schwannomatosis patient registry. The International Schwannomatosis Registry (ISR) was built around key data points that allow confirmation of the diagnosis and identification of potential research subjects to advance research to further the knowledge base for schwannomatosis. A registry with 389 participants enrolled to date has been established. Twenty-three additional subjects are pending review. A formal process has been established for scientific investigators to propose research projects, identify eligible subjects, and seek collaborators from ISR sites. Research collaborations have been created using the information collected by the registry and are currently being conducted. The ISR is a platform from which multiple research endeavors can be launched, facilitating connections between affected individuals interested in participating in research and researchers actively investigating a variety of aspects of schwannomatosis. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

  12. Frequent binge drinking five to six years after exposure to 9/11: Findings from the World Trade Center Health Registry

    PubMed Central

    Welch, Alice E.; Caramanica, Kimberly; Maslow, Carey B.; Cone, James E.; Farfel, Mark R.; Keyes, Katherine M.; Stellman, Steven D.; Hasin, Deborah S.

    2014-01-01

    Background Exposure to 9/11 may have considerable long-term impact on health behaviors, including increased alcohol consumption. We examined the association between frequent binge drinking, posttraumatic stress disorder (PTSD), and number of 9/11-specific experiences among World Trade Center Health Registry (Registry) enrollees five-to-six years after 9/11. Methods Participants included 41,284 lower Manhattan residents, workers, passers-by, and rescue/recovery workers aged 18 or older without a pre-9/11 PTSD diagnosis who completed Wave 1 (2003–2004) and Wave 2 (2006–2007) interviews. Frequent binge drinking was defined as consuming five or more drinks on five or more occasions in the prior 30 days at Wave 2. Probable PTSD was defined as scoring 44 or greater on the PTSD Checklist. 9/11 exposure was measured as the sum of 12 experiences and grouped as none/low (0–1), medium (2–3), high (4–5) and very high (6+). Results Frequent binge drinking was significantly associated with increasing 9/11 exposure and PTSD. Those with very high and high exposures had a higher prevalence of frequent binge drinking (13.7% and 9.8%, respectively) than those with medium and low exposures (7.5% and 4.4%, respectively). Upon stratification, very high and high exposures were associated with frequent binge drinking in both the PTSD and no PTSD subgroups. Conclusions Our findings suggest that 9/11 exposure had an impact on frequent binge drinking five-to-six years later among Registry enrollees. Understanding the effects of traumatic exposure on alcohol use is important to identify risk factors for post-disaster alcohol misuse, inform policy, and improve post-disaster psychological and alcohol screening and counseling. PMID:24831753

  13. Is there evidence for correct diagnosis in cystic fibrosis registries?

    PubMed

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

    2014-05-01

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

  14. 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

  15. Association Between Severity and the Determinant-Based Classification, Atlanta 2012 and Atlanta 1992, in Acute Pancreatitis

    PubMed Central

    Chen, Yuhui; Ke, Lu; Tong, Zhihui; Li, Weiqin; Li, Jieshou

    2015-01-01

    Abstract Recently, the determinant-based classification (DBC) and the Atlanta 2012 have been proposed to provide a basis for study and treatment of acute pancreatitis (AP). The present study aimed to evaluate the association between severity and the DBC, the Atlanta 2012 and the Atlanta 1992, in AP. Patients admitted to our center with AP from January 2007 to July 2013 were reviewed retrospectively. Patients were assigned to severity categories for all the 3 classification systems. The primary outcomes include long-term clinical prognosis (mortality and length-of-hospital stay), major complications (intraabdominal hemorrhage, multiple-organ dysfunction, single organ failure [OF], and sepsis) and clinical interventions (surgical drainage, continuous renal replace therapy [CRRT] lasting time, and mechanical ventilation [MV] lasting time). The classification systems were validated and compared in terms of these abovementioned primary outcomes. A total of 395 patients were enrolled in this retrospective study with an overall 8.86% in-hospital mortality. Intraabdominal hemorrhage was present in 27 (6.84%) of the patients, multiple-organ dysfunction in 73(18.48%), single OF in 67 (16.96%), and sepsis in 73(18.48%). For each classification system, different categories regarding severity were associated with statistically different clinical mortality, major complications, and clinical interventions (P < 0.05). However, the Atlanta 2012 and the DBC performed better than the Atlanta 1992, and they were comparable in predicting mortality (area under curve [AUC] 0.899 and 0.955 vs 0.585, P < 0.05); intraabdominal hemorrhage (AUC 0.930 and 0.961 vs 0.583, P < 0.05), multiple-organ dysfunction (AUC 0.858 and 0.881 vs 0.595, P < 0.05), sepsis (AUC 0.826 and 0.879 vs 0.590, P < 0.05), and surgical drainage (AUC 0.900 and 0.847 vs 0.606, P < 0.05). For continuous variables, the Atlanta 2012 and the DBC were also better than the Atlanta 1992, and they were

  16. Seasonal variation and trend of chicken pox in the southern region of Saudi Arabia (2007-2012).

    PubMed

    Saleh, Noha; Al Moghazy, Bassem

    2014-12-01

    Chicken pox is a contagious disease caused by varicella zoster virus. Children are most susceptible to infection. In 1998, the WHO recommended that routine childhood varicella vaccination be considered in countries where the disease is a relatively important public health concern. There are few data on the trends of chicken pox. We aimed to evaluate the trend of chicken pox in Saudi Arabia (KSA) during the period 2007-2012. Data were collected by retrospective review of the existing anonymous surveillance records and book registries of chicken pox cases at the preventive medicine department of Armed Forces Hospital of the Southern Region of Saudi Arabia from 2007 to 2012. The collected data included the number, age, and sex of registered cases. A seasonal pattern was clearly demonstrated, with peak in March and April. There was also a decreasing trend from 2007 to 2012. Most cases occurred in the age group 4-15 years. The number of infected male patients was a little higher compared with female patients. These results indicate success in controlling the disease in the southern region of Saudi Arabia, which may be attributed to the implementation of public health interventions targeted at reducing infectious diseases (such as the introduction of varicella zoster vaccine in 2008). We recommend that a future study be conducted on the severity of chicken pox infection in adults (hospitalization, complications, and death) and a national survey among adults for the seroprevalence of markers of infection with varicella zoster.

  17. Clinical presentation of intraocular retinoblastoma; 5-year hospital-based registry in Egypt.

    PubMed

    El Zomor, Hossam; Nour, Radwa; Alieldin, Adel; Taha, Hala; Montasr, Mohamed M; Moussa, Emad; El Nadi, Enas; Ezzat, Sameera; Alfaar, Ahmad S

    2015-12-01

    To study the presenting signs of Retinoblastoma in Egypt at Egypt's main pediatric oncology referral center. This is a prospective descriptive study (hospital-based registry) conducted at Children's Cancer Hospital Egypt between July 2007 and December 2012. Out of 262 patients diagnosed with retinoblastoma, 244 were suffering from intra-ocular disease at presentation. One hundred thirty-nine (57%) patients presented with unilateral disease, while 105 (43%) suffered bilateral disease. The mean age at presentation was 20.6 ± 17 months, averaging 18.87 ± 11.76 months for bilateral and 25.72 ± 18.78 months for unilateral disease. The most common clinical presentation was leukocoria in 180 (73.8%) patients, strabismus in 32 (13.1%) patients and decreased visual acuity in 12 (4.9%) patients. Group D and E disease represented 62% of all affected eyes. Patients with advanced disease (Group C-E) had longer duration of symptoms. In Egypt, retinoblastoma patients present more frequently with advanced disease. There is an ever-increasing need to develop a national team dedicated to studying disease significance and formulating a national awareness program. Copyright © 2015 The Authors. Production and hosting by Elsevier B.V. All rights reserved.

  18. Innovation Abstracts; Volume XIV, 1992.

    ERIC Educational Resources Information Center

    Roueche, Suanne D., Ed.

    1992-01-01

    This series of 30 one- to two-page abstracts covering 1992 highlights a variety of innovative approaches to teaching and learning in the community college. Topics covered in the abstracts include: (1) faculty recognition and orientation; (2) the Amado M. Pena, Jr., Scholarship Program; (3) innovative teaching techniques, with individual abstracts…

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

    PubMed

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

    2017-02-27

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

  20. National Youth Sports Program: Math/Science. Final report, [June 1, 1992--November 30, 1992

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

    Not Available

    1992-12-31

    NYSP, a partnership of NCAA, HHS, and colleges and universities, is aimed at sports instruction and physical activity for disadvantaged youth. In 1992, DOE joined in to add a mathematics/science component. Federal funds were used to conduct mathematics and science education components on a limited pilot basis at 16 sites. Recommendations for future improvements are given.

  1. Factors Associated with Student Plagiarism in a Post-1992 University

    ERIC Educational Resources Information Center

    Bennett, Roger

    2005-01-01

    A model intended to explain the incidence of plagiarism among undergraduates in the Business Studies department of a post-1992 university was constructed and tested on a sample of 249 students completing Business Studies units at a post-1992 university in Greater London. It was hypothesised that the occurrence of plagiarism could be predicted via…

  2. 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.

  3. 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).

  4. 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

  5. Tools and data services registry: a community effort to document bioinformatics resources

    PubMed Central

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C.E.; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand. Here we present a community-driven curation effort, supported by ELIXIR—the European infrastructure for biological information—that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners. As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599

  6. Facts at a Glance: [Report on 1992 Data on Teen Fertility in the United States].

    ERIC Educational Resources Information Center

    Moore, Kristin, Comp.; And Others

    This fact sheet contains data on teen pregnancy. The folowing information is provided: teen birth rate, 1960-1992; number of births to teens, 1960-1992; percent of non-marital teen births, 1960-1992; births to unmarried women, by age group, 1992; international comparison on teen birth rate; abortion rate among U.S. teens, 1973-1990; pregnancy…

  7. Commercial fertilizers 1992

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

    Berry, J.T.; Montgomery, M.H.

    1992-12-01

    Fertilizer consumption information in the USA for 1992 submitted by state regulatory officials is presented. This includes total sales or shipments for farm and non-farm use. Liming materials were excluded. Materials used for manufacture or blending of reported fertilizers or for use in other fertilizers are excluded to avoid double-counting. The consumption of multiple-nutrient and single-nutrient fertilizers is listed. Dry bulk, fluid, and bagged classes are given. Typical fertilizers include: anhydrous ammonia, aqua ammonia, nitrogen solutions, urea, ammonium nitrates, ammonium sulfates, phosphoric acid, superphosphates, potassium chlorides, and potassium sulfates.

  8. Improving Diabetes Outcomes Using a Web-Based Registry and Interactive Education: A Multisite Collaborative Approach

    ERIC Educational Resources Information Center

    Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  9. Summary of Research 1992

    DTIC Science & Technology

    1992-12-01

    Tutorial on Their Data Sharing," The International Journal on Very Large Data Bases (VLDB Journal ), Vol. 1, No. 1, July 1992. Hsiao, D. K., "Federated...Databases and Systems: A Tutorial on Their Resource Consolidation," The International Journal on Very Large Data Bases (VLDB Journal ), Vol. 1, No. 2...Game: Normal Approximation," accepted extensions of games and considers for publication by International possible applications. Journal of Game Theory

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

    PubMed

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

    2012-10-15

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

  11. Impact of Inclusion of Industry Trial Results Registries as an Information Source for Systematic Reviews

    PubMed Central

    Potthast, Regine; Vervölgyi, Volker; McGauran, Natalie; Kerekes, Michaela F.; Wieseler, Beate; Kaiser, Thomas

    2014-01-01

    Background Clinical trial results registries may contain relevant unpublished information. Our main aim was to investigate the potential impact of the inclusion of reports from industry results registries on systematic reviews (SRs). Methods We identified a sample of 150 eligible SRs in PubMed via backward selection. Eligible SRs investigated randomized controlled trials of drugs and included at least 2 bibliographic databases (original search date: 11/2009). We checked whether results registries of manufacturers and/or industry associations had also been searched. If not, we searched these registries for additional trials not considered in the SRs, as well as for additional data on trials already considered. We reanalysed the primary outcome and harm outcomes reported in the SRs and determined whether results had changed. A “change” was defined as either a new relevant result or a change in the statistical significance of an existing result. We performed a search update in 8/2013 and identified a sample of 20 eligible SRs to determine whether mandatory results registration from 9/2008 onwards in the public trial and results registry ClinicalTrials.gov had led to its inclusion as a standard information source in SRs, and whether the inclusion rate of industry results registries had changed. Results 133 of the 150 SRs (89%) in the original analysis did not search industry results registries. For 23 (17%) of these SRs we found 25 additional trials and additional data on 31 trials already included in the SRs. This additional information was found for more than twice as many SRs of drugs approved from 2000 as approved beforehand. The inclusion of the additional trials and data yielded changes in existing results or the addition of new results for 6 of the 23 SRs. Of the 20 SRs retrieved in the search update, 8 considered ClinicalTrials.gov or a meta-registry linking to ClinicalTrials.gov, and 1 considered an industry results registry. Conclusion The inclusion of

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

    PubMed Central

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

    2008-01-01

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

  13. Classification of Topographical Pattern of Spasticity in Cerebral Palsy: A Registry Perspective

    ERIC Educational Resources Information Center

    Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…

  14. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... retrieved using the System for Award Management (SAM) search tool, which can be accessed via https://www...”. Contractors are required to register with SAM in order to gain access to the Disaster Response Registry. [74...

  15. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... retrieved using the System for Award Management (SAM) search tool, which can be accessed via https://www...”. Contractors are required to register with SAM in order to gain access to the Disaster Response Registry. [74...

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

    PubMed

    Kuwatsuka, Yachiyo

    2016-01-01

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

  17. 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.

  18. The Condition of Education, 1992.

    ERIC Educational Resources Information Center

    Alsalam, Nabeel; And Others

    The current status of education for 1992 is presented in the form of education "indicators"--key data that measure the health of education, monitor important developments, and show trends in major aspects of education. The 60 indicators have been divided into 6 areas: (1) access, participation, and progress; (2) achievement, attainment,…

  19. Curriculum Study Report, June 1992.

    ERIC Educational Resources Information Center

    Cohen, Arthur M.

    In 1992, the Center for the Study of Community Colleges (CSCC) in California examined the liberal arts curriculum in community colleges nationwide through a random sampling of 164 community colleges. Using spring 1991 catalogs and class schedules, course sections in the liberal arts were counted and tallied according to a coding scheme developed…

  20. Preface: Phonons 2007

    NASA Astrophysics Data System (ADS)

    Perrin, Bernard

    2007-06-01

    Conference logo The conference PHONONS 2007 was held 15-20 July 2007 in the Conservatoire National des Arts et Métiers (CNAM) Paris, France. CNAM is a college of higher technology for training students in the application of science to industry, founded by Henri Grégoire in 1794. This was the 12th International Conference on Phonon Scattering in Condensed Matter. This international conference series, held every 3 years, started in France at Sainte-Maxime in 1972. It was then followed by meetings at Nottingham (1975), Providence (1979), Stuttgart (1983), Urbana-Champaign (1986), Heidelberg (1989), Ithaca (1992), Sapporo (1995), Lancaster (1998), Dartmouth (2001) and St Petersburg (2004). PHONONS 2007 was attended by 346 delegates from 37 different countries as follows: France 120, Japan 45, Germany 25, USA 25, Russia 21, Italy 13, Poland 9, UK 9, Canada 7, The Netherlands 7, Finland 6, Spain 6, Taiwan 6, Greece 4, India 4, Israel 4, Ukraine 4, Serbia 3, South Africa 3, Argentina 2, Belgium 2, China 2, Iran 2, Korea 2, Romania 2, Switzerland 2, and one each from Belarus, Bosnia-Herzegovina, Brazil, Bulgaria, Egypt, Estonia, Mexico, Moldova, Morocco, Saudi Arabia, Turkey. There were 5 plenary lectures, 14 invited talks and 84 oral contributions; 225 posters were presented during three poster sessions. The first plenary lecture was given by H J Maris who presented fascinating movies featuring the motion of a single electron in liquid helium. Robert Blick gave us a review on the new possibilities afforded by nanotechnology to design nano-electomechanical systems (NEMS) and the way to use them to study elementary and fundamental processes. The growing interest for phonon transport studies in nanostructured materials was demonstrated by Arun Majumdar. Andrey Akimov described how ultrafast acoustic solitons can monitor the optical properties of quantum wells. Finally, Maurice Chapellier told us how

  1. Melanoma of the Skin in the Danish Cancer Registry and the Danish Melanoma Database: A Validation Study.

    PubMed

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David

    2018-05-01

    The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance, and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n = 200) and the Melanoma Database (n = 200) during 2004-2014, using the Danish Pathology Registry as "gold standard" reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI = 94, 99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87% and 100% in the Cancer Registry and 93% and 100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database is high, supporting their use in epidemiologic studies.

  2. Estimation of road vehicle exhaust emissions from 1992 to 2010 and comparison with air quality measurements in Genoa, Italy

    NASA Astrophysics Data System (ADS)

    Zamboni, Giorgio; Capobianco, Massimo; Daminelli, Enrico

    An investigation into road transport exhaust emissions in the Genoa urban area was performed by comparing the quantities of carbon monoxide (CO), nitrogen oxides (NO x), nitrogen dioxide (NO 2) and particulate matter (PM) emitted by different vehicle categories with air quality measurements referred to the same pollutants. Exhaust emissions were evaluated by applying the PROGRESS (computer PROGramme for Road vehicle EmiSSions evaluation) code, developed by the Internal Combustion Engines Group of the University of Genoa, to eight different years (from 1992 to 2010), considering spark ignition and Diesel passenger cars and light duty vehicles, heavy duty vehicles and buses, motorcycles and mopeds. Changes in terms of vehicles number, mileage and total emissions are presented together with relative distributions among the various vehicle categories. By comparing 1992 and 2010 data, calculated trends show a 7% increase in the number of vehicles, with total mileage growing at a faster rate (approx. 22%); total emissions decrease considerably, by approximately 50% for NO x and PM, 70% for HC and 80% for CO, due to improvements in engines and fuels forced by the stricter European legislation and the fleet renewal, while primary NO 2 emission will be very close to 1992 level, after a decrease of about 18% in 2000. Air quality was analysed by selecting traffic and background measuring stations from the monitoring network managed by the Environmental Department of the Province of Genoa: average annual concentrations of considered pollutants from 1994 to 2007 were calculated in order to obtain the relative historical trends and compare them with European public health limits and with road vehicle emissions. Though an important reduction in pollutant concentrations has been achieved as a consequence of cleaner vehicles, some difficulties in complying with present and/or future NO 2 and PM 10 limits are also apparent, thus requiring suitable measures to be taken by the local

  3. How TAVI registries report clinical outcomes—A systematic review of endpoints based on VARC-2 definitions

    PubMed Central

    Kolominsky-Rabas, Peter L.

    2017-01-01

    Introduction Transcatheter aortic valve implantation (TAVI) has been demonstrated to be an alternative treatment for severe aortic stenosis in patients considered as high surgical risk. Since its first human implantation by Cribier et al., TAVI has been shown to increase survival rate and quality of life for high surgical risks patients. The objective of this study is to provide an overview of TAVI registries and the reporting clinical outcomes based on the VARC-2 definitions. In addition, the comparability and adherence of VARC-2 reporting within the identified TAVI registries was reviewed. Materials and methods A systematic review of TAVI registries reporting VARC-2 definitions has been performed in line with PRISMA guidelines in PubMed, ScienceDirect, Scopus databases and EMBASE. Based on VARC-2, patients’ characteristics and procedure characteristics, 30-day clinical outcomes, 1-year mortality and composited endpoints were extracted from each registry’s publications. Results This review identified 466 studies that were potentially relevant, and 20 TAVI registries reported VARC-2 definitions involved in our present review. Of all 20 registries, an overall sample size of 12,583 patients was involved. The 30-day all-cause mortality ranged from 0 to 12.7%. From 20 registries, 14 registries reported the cardiovascular mortality at 30 days. 9 registries reported myocardial infarction (MI) rate based on VARC-2 definitions, and 7 registries reported peri-procedural MI rate (<72h). In our review, most of registries presented MI rates ranging from 0.5% to 2%. The majority of registries have reported complications such as bleeding, vascular complications and new pacemaker implantation. Conclusion Since the introduction of VARC definitions from 2011, VARC and VARC-2 definitions are still not systematically used by all TAVI studies. These endpoint definitions warrant a concise and systemic analysis of outcome measures. Reporting TAVI-outcome uniformly makes study result

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

    PubMed

    Palta, Mari; LeCaire, Tamara

    2009-08-01

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

  5. Using Registries to Identify Adverse Events in Rheumatic Diseases

    PubMed Central

    Lionetti, Geraldina; Kimura, Yukiko; Schanberg, Laura E.; Beukelman, Timothy; Wallace, Carol A.; Ilowite, Norman T.; Winsor, Jane; Fox, Kathleen; Natter, Marc; Sundy, John S.; Brodsky, Eric; Curtis, Jeffrey R.; Del Gaizo, Vincent; Iyasu, Solomon; Jahreis, Angelika; Meeker-O’Connell, Ann; Mittleman, Barbara B.; Murphy, Bernard M.; Peterson, Eric D.; Raymond, Sandra C.; Setoguchi, Soko; Siegel, Jeffrey N.; Sobel, Rachel E.; Solomon, Daniel; Southwood, Taunton R.; Vesely, Richard; White, Patience H.; Wulffraat, Nico M.; Sandborg, Christy I.

    2013-01-01

    The proven effectiveness of biologics and other immunomodulatory products in inflammatory rheumatic diseases has resulted in their widespread use as well as reports of potential short- and long-term complications such as infection and malignancy. These complications are especially worrisome in children who often have serial exposures to multiple immunomodulatory products. Post-marketing surveillance of immunomodulatory products in juvenile idiopathic arthritis (JIA) and pediatric systemic lupus erythematosus is currently based on product-specific registries and passive surveillance, which may not accurately reflect the safety risks for children owing to low numbers, poor long-term retention, and inadequate comparators. In collaboration with the US Food and Drug Administration (FDA), patient and family advocacy groups, biopharmaceutical industry representatives and other stakeholders, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Duke Clinical Research Institute (DCRI) have developed a novel pharmacosurveillance model (CARRA Consolidated Safety Registry [CoRe]) based on a multicenter longitudinal pediatric rheumatic diseases registry with over 8000 participants. The existing CARRA infrastructure provides access to much larger numbers of subjects than is feasible in single-product registries. Enrollment regardless of medication exposure allows more accurate detection and evaluation of safety signals. Flexibility built into the model allows the addition of specific data elements and safety outcomes, and designation of appropriate disease comparator groups relevant to each product, fulfilling post-marketing requirements and commitments. The proposed model can be applied to other pediatric and adult diseases, potentially transforming the paradigm of pharmacosurveillance in response to the growing public mandate for rigorous post-marketing safety monitoring. PMID:24144710

  6. The St. Thomas' UK Adult Twin Registry.

    PubMed

    Spector, Tim D; MacGregor, Alex J

    2002-10-01

    The Registry consists of nearly 10,000 monozygous and dizygous adult caucasian twins aged 18-80 from all over the UK and was started in 1993. This is a volunteer sample recruited by successive media campaigns without selecting for particular diseases or traits. All twins receive a series of disease questionnaires. In addition over half the twins have been assessed in detail clinically for several hundred phenotypes related to common diseases or intermediate traits. The focus has been primarily on cardiovascular, metabolic, musculoskeletal, dermatological, and opthalmological diseases. Over 3000 DZ twins have had a genome wide scan performed as well as many candidate genes allowing both linkage and association studies. The registry has led to many successful innovative research projects, particularly in common diseases previously thought to be predominantly environmental and helped positionally clone some novel genes for common diseases.

  7. 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.

  8. 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

  9. [Ethics guidelines for the creation and use of registries for biomedical research purposes].

    PubMed

    Abajo Iglesias, Francisco J de; Feito Grande, Lydia; Júdez Gutiérrez, Javier; Martín Arribas, M Concepción; Terracini, Benedetto; Pàmpols Ros, Teresa; Campos Castelló, Jaime; Martín Uranga, Amelia; Abascal Alonso, Moisés; Herrera Carranza, Joaquín; Sánchez Martínez, María José

    2008-01-01

    The clinical information stored in registries and records of different types is a fundamental tool for biomedical research. Up until just a few years ago, hardly any limitations existed on the creation and use of epidemiological registries or the use of information from pre-existing records for research purposes. This situation has changed substantially due mainly to the growing importance current laws place upon the safeguarding of the privacy and confidentiality of personal data. Although the legal framework is already quite explicit, a certain degree of leeway exists for ethical debate and prudence advice for the purpose of conducting valid, useful research with this information which will also respect the rights of the subjects and the laws in force. These guidelines deal with those aspects which have been considered relevant from an ethical standpoint in the handling of records and registries for research-related purposes, including not only the use but also the creation proper of the registries. A total of twenty-four recommendations are provided, grouped into ten sections: warranting of the creation of registry, organization and definition of responsibilities, scientific validity of the research project, ethical requirements of the collections of anonymous and anonymized data, ethical requirements of the registries including personal data, uses of medical records for research purposes, use of historical records of deceased individuals, contact with the research subjects, notification of results and review by a Research Ethics Committee.

  10. 1992 Environmental monitoring report, Sandia National Laboratories, Albuquerque, New Mexico

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

    Culp, T.; Cox, W.; Hwang, H.

    1993-09-01

    This 1992 report contains monitoring data from routine radiological and nonradiological environmental surveillance activities. summaries of significant environmental compliance programs in progress, such as National Environmental Policy Act documentation, environmental permits, envirorunental restoration, and various waste management programs for Sandia National Laboratories in Albuquerque, New Mexico, are included. The maximum offsite dose impact was calculated to be 0.0034 millirem. The total population within a 50-mile radius of Sandia National Laboratories/New Mexico received an estimated collective dose of 0.019 person-rem during 1992 from the laboratories` operations. As in the previous year, the 1992 operations at Sandia National Laboratories/New Mexico had nomore » discernible impact on the general public or on the environment.« less

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

    NASA Astrophysics Data System (ADS)

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

    2017-12-01

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

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

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

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

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

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

    PubMed

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

    2007-07-01

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

  14. Evaluation of participant recruitment methods to a rare disease online registry.

    PubMed

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. © 2014 Wiley Periodicals, Inc.

  15. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry number. 24.115 Section 24.115 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT.... (Approved by the Office of Management and Budget under control numbers 1512-0058 and 1512-0503) [T.D. ATF...

  16. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry number. 24.115 Section 24.115 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT.... (Approved by the Office of Management and Budget under control numbers 1512-0058 and 1512-0503) [T.D. ATF...

  17. The New York State cardiac registries: history, contributions, limitations, and lessons for future efforts to assess and publicly report healthcare outcomes.

    PubMed

    Hannan, Edward L; Cozzens, Kimberly; King, Spencer B; Walford, Gary; Shah, Nirav R

    2012-06-19

    In 1988, the New York State Health Commissioner was confronted with hospital-level data demonstrating very large, multiple-year, interhospital variations in short-term mortality and complications for cardiac surgery. The concern with the extent to which these differences were due to variations in patients' pre-surgical severity of illness versus hospitals' quality of care led to the development of clinical registries for cardiac surgery in 1989 and for percutaneous coronary interventions in 1992 in New York. In 1990, the Department of Health released hospitals' risk-adjusted cardiac surgery mortality rates for the first time, and shortly thereafter, similar data were released for hospitals and physicians for percutaneous coronary interventions, cardiac valve surgery, and pediatric cardiac surgery (only hospital data). This practice is still ongoing. The purpose of this communication is to relate the history of this initiative, including changes or purported changes that have occurred since the public release of cardiac data. These changes include decreases in risk-adjusted mortality, cessation of cardiac surgery in New York by low-volume and high-mortality surgeons, out-of-state referral or avoidance of cardiac surgery/angioplasty for high-risk patients, alteration of contracting choices by insurance companies, and modifications in market share of cardiac hospitals. Evidence related to these impacts is reviewed and critiqued. This communication also includes a summary of numerous studies that used New York's cardiac registries to examine a variety of policy issues regarding the choice and use of cardiac procedures, the comparative effectiveness of competing treatment options, and the examination of the relationship among processes, structures, and outcomes of cardiac care. Copyright © 2012 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

  18. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-05-25

    ...] Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established.... The agency is also seeking comments from industry on the Reportable Food Registry requirements, and... the implementation of the Reportable Food Registry on September 8, 2009, and informs industry about...

  19. The Establishment of an Inflammatory Breast Cancer Registry and Biospecimen Repository

    DTIC Science & Technology

    2004-08-01

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

  20. African-American participants in a bipolar disorder registry: clinical and treatment characteristics.

    PubMed

    Kupfer, David J; Frank, Ellen; Grochocinski, Victoria J; Houck, Patricia R; Brown, Charlotte

    2005-02-01

    The goal of this paper was to compare clinical characteristics and treatment history of African-American and Caucasian participants in a bipolar disorder registry. The Western Pennsylvania Bipolar Disorder Registry used several recruitment methods to reach individuals self-identified as having bipolar disorder. Individuals who contacted and joined the registry completed an interviewer-administered questionnaire on clinical characteristics and treatment history. A sample of 2,718 registry participants was analyzed in order to compare these characteristics and history by race. African-Americans in the registry reported a greater number of inpatient hospitalizations (9.8 versus 4.4) than Caucasians, as well as a higher suicide attempt rate (64% versus 49%). African-American participants were more likely to report a family member with schizophrenia. With respect to psychotropic medication, African-Americans were less likely to report taking antimanic medication or benzodiazepines, but more likely to report taking antipsychotics than Caucasians. The present findings reinforce previous reports regarding the chronicity and severity of bipolar disorder among African-Americans. They also support previous studies that found high rates of attempted suicide among African-Americans with bipolar disorder. These findings provide further impetus for specific community and mental health services delivery efforts to reduce barriers to early accurate diagnosis and to appropriate ambulatory treatment for bipolar disorder. Copyright (c) 2005, Blackwell Munksgaard.