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Sample records for adherence registry e-star

  1. Adherence to guidelines: A national audit of the management of acute upper gastrointestinal bleeding. The REASON registry

    PubMed Central

    Lu, Yidan; Barkun, Alan N; Martel, Myriam

    2014-01-01

    OBJECTIVES: To assess process of care in nonvariceal upper gastrointestinal bleeding (NVUGIB) using a national cohort, and to identify predictors of adherence to ‘best practice’ standards. METHODS: Consecutive charts of patients hospitalized for acute upper gastrointestinal bleeding across 21 Canadian hospitals were reviewed. Data regarding initial presentation, endoscopic management and outcomes were collected. Results were compared with ‘best practice’ using established guidelines on NVUGIB. Adherence was quantified and independent predictors were evaluated using multivariable analysis. RESULTS: Overall, 2020 patients (89.4% NVUGIB, variceal in 10.6%) were included (mean [± SD] age 66.3±16.4 years; 38.4% female). Endoscopy was performed in 1612 patients: 1533 with NVUGIB had endoscopic lesions (63.1% ulcers; high-risk stigmata in 47.8%). Early endoscopy was performed in 65.6% and an assistant was present in 83.5%. Only 64.5% of patients with high-risk stigmata received endoscopic hemostasis; 9.8% of patients exhibiting low-risk stigmata also did. Intravenous proton pump inhibitor was administered after endoscopic hemostasis in 95.7%. Rebleeding and mortality rates were 10.5% and 9.4%, respectively. Multivariable analysis revealed that low American Society of Anesthesiologists score patients had fewer assistants present during endoscopy (OR 0.63 [95% CI 0.48 to 0.83), a hemoglobin level <70 g/L predicted inappropriate high-dose intravenous proton pump inhibitor use in patients with low-risk stigmata, and endoscopies performed during regular hours were associated with longer delays from presentation (OR 0.33 [95% CI 0.24 to 0.47]). CONCLUSION: There was variability between the process of care and ‘best practice’ in NVUGIB. Certain patient and situational characteristics may influence guideline adherence. Dissemination initiatives must identify and focus on such considerations to improve quality of care. PMID:25314356

  2. Ultraviolet Variability of B[e] Stars

    NASA Astrophysics Data System (ADS)

    Krtička, J.; Krtičková, I.

    2017-02-01

    Hot stars emit most of their light in the ultraviolet. Therefore, the visual domain in which the variability is mostly studied traces just a small part of the spectral energy distribution. To overcome this, we searched archival data of the IUE satellite for the ultraviolet spectra of B[e] stars. We studied each star individually and identified the differences between the variability in the near and far ultraviolet domains. Although the data are typically very sparse, we detected the variability of the spectral energy distribution and of the line profiles. The variability has several sources of origin, including the light absorption by the dust clouds and the disk, pulsations, and eclipses in the case of binaries. The ultraviolet domain is the key to understanding the variability of B[e] stars.

  3. JBEI Registry

    SciTech Connect

    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.

  4. Long acting risperidone in Australian patients with chronic schizophrenia: 24-month data from the e-STAR database

    PubMed Central

    2012-01-01

    Background This observational study was designed to collect treatment outcomes data in patients using the electronic Schizophrenia Treatment Adherence Registry (e-STAR). Methods Patients with schizophrenia or schizoaffective disorder in Australia who were prescribed risperidone long-acting injection (RLAI) between 2003 and 2007 were assessed 12-months retrospectively, at baseline and 24-months prospectively at 3-monthly intervals. The intent-to-treat population, defined as all patients who received at least one dose of RLAI at baseline, was used for the efficacy and safety analyses. Results At total of 784 patients (74% with schizophrenia, 69.8% male) with a mean age of 37.1 ± 12.5 years and 10.6 ± 9.5 years since diagnosis were included in this Australian cohort. A significant improvement in mean Clinical Global Impression - severity score was observed at 24-months (4.52 ± 1.04 at baseline, 3.56 ± 1.10 at 24-months). Most of this improvement was seen by 3-months and was also reflected in mean Global Assessment of Functioning score, which improved significantly at 24-months (42.9 ± 14.5 at baseline, 59 ± 15.4 at 24-months). For patients still receiving RLAI at 24-months there was an increase from a mean baseline RLAI dose of 26.4 ± 5 mg to 43.4 ± 15.7 mg. Sixty-six percent of patients discontinued RLAI before the 24-month period--this decreased to 46% once patients lost to follow-up were excluded. Conclusion Over the 24-month period, initiation of RLAI was associated with improved patient functioning and illness severity in patients with schizophrenia or schizoaffective disorder. Improved outcomes were observed early and sustained throughout the study. Trial Registration Clinical Trials Registration Number, NCT00283517. PMID:22448928

  5. Stroke Trials Registry

    MedlinePlus

    ... News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions Sponsors ... a clinical trial near you Welcome to the Stroke Trials Registry Our registry of clinical trials in ...

  6. B[e] Star CI Cam: Eighteen Years of Research

    NASA Astrophysics Data System (ADS)

    Goranskij, V. P.; Barsukova, E. A.; Bjorkman, K. S.; Burenkov, A. N.; Klochkova, V. G.; Manset, N.; Metlova, N. V.; Miroshnichenko, A. S.; Panchuk, V. E.; Yushkin, M. V.; Zharikov, S. V.

    2017-02-01

    We present the results of extensive spectroscopic and photometric observations of CI Cam performed after its outburst in April 1998. The outburst was interpreted as a thermonuclear runaway of hydrogen on the surface of a white dwarf (WD). We detected variations of both the brightness and the He II 4686 Å line radial velocity with a period of 19d.400±0d.015 due to orbital motion of the WD. The rapid brightness variations on a timescale of hours is explained by pulsations of a B4 III-V[e] star. In 2012, the system entered an active state with the stronger He II line and with the brightness increased by 0.4 mag. We observed a slow low-amplitude drift in the velocity of Fe II and [N II] emission lines which we explained by the orbital motion of the B[e] star + WD system along with all its gaseous environment around a third companion invisible in the spectra. The active phase of the B[e] star might have been initiated by a close approach of the binary and the third companion in 2007.

  7. Evolutionary status of isolated B[e] stars

    NASA Astrophysics Data System (ADS)

    Lee, Chien-De; Chen, Wen-Ping; Liu, Sheng-Yuan

    2016-08-01

    Aims: We study a sample of eight B[e] stars with uncertain evolutionary status to shed light on the origin of their circumstellar dust. Methods: We performed a diagnostic analysis on the spectral energy distribution beyond infrared wavelengths, and conducted a census of neighboring region of each target to ascertain its evolutionary status. Results: In comparison to pre-main sequence Herbig stars, these B[e] stars show equally substantial excess emission in the near-infrared, indicative of existence of warm dust, but much reduced excess at longer wavelengths, so the dusty envelopes should be compact in size. Isolation from star-forming regions excludes the possibility of their pre-main sequence status. Six of our targets, including HD 50138, HD 45677, CD-24 5721, CD-49 3441, MWC 623, and HD 85567, have been previously considered as FS CMa stars, whereas HD 181615/6 and HD 98922 are added to the sample by this work. We argue that the circumstellar grains of these isolated B[e] stars, already evolved beyond the pre-main sequence phase, should be formed in situ. This is in contrast to Herbig stars, which inherit large grains from parental molecular clouds. It has been thought that HD 98922, in particular, is a Herbig star because of its large infrared excess, but we propose it being in a more evolved stage. Because dust condenses out of stellar mass loss in an inside-out manner, the dusty envelope is spatially confined, and anisotropic mass flows, or anomalous optical properties of tiny grains, lead to the generally low line-of-sight extinction toward these stars.

  8. 76 FR 32141 - Proposed Information Collection; Comment Request; Application for the President's “E” and “E STAR...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-03

    ... President's ``E'' and ``E STAR'' Awards for Export Expansion AGENCY: International Trade Administration... contributions to the increase of American exports. The President's ``E STAR'' Award recognizes the...

  9. Rethinking adherence.

    PubMed

    Steiner, John F

    2012-10-16

    In 2012, the Centers for Medicare & Medicaid Services (CMS) will introduce measures of adherence to oral hypoglycemic, antihypertensive, and cholesterol-lowering drugs into its Medicare Advantage quality program. To meet these quality goals, delivery systems will need to develop and disseminate strategies to improve adherence. The design of adherence interventions has too often been guided by the mistaken assumptions that adherence is a single behavior that can be predicted from readily available patient characteristics and that individual clinicians alone can improve adherence at the population level.Effective interventions require recognition that adherence is a set of interacting behaviors influenced by individual, social, and environmental forces; adherence interventions must be broadly based, rather than targeted to specific population subgroups; and counseling with a trusted clinician needs to be complemented by outreach interventions and removal of structural and organizational barriers. To achieve the adherence goals set by CMS, front-line clinicians, interdisciplinary teams, organizational leaders, and policymakers will need to coordinate efforts in ways that exemplify the underlying principles of health care reform.

  10. 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.

  11. Disk Formation in Oblate B[e] Stars

    NASA Astrophysics Data System (ADS)

    Araya, I.; Arcos, C.; Curé, M.

    2017-02-01

    We investigate the possible role of line-driven winds in the circumstellar envelope in B[e] stars, mainly the role of the Ω-slow wind solution, which is characterized by a slower terminal velocity and a higher mass-loss rate, in comparison with the standard (m-CAK) wind solution. In this work, we assume two scenarios: 1) a spherically symmetric star and 2) an oblate star considering only the oblate correction factor. For certain values of the line force parameters (according to previous works), we obtain a density contrast of gtrsim102 between the equatorial and polar density in both scenarios, which are characterized by a fast polar wind and a slow and denser wind when the Ω-slow wind solution is obtained. All these properties are enhanced when the oblate correction factor is included in our calculations.

  12. [Role of cancer registries].

    PubMed

    Schaffer, P

    1995-05-01

    The first Cancer Registries were created in 1975 in France. Their ulterior development and their scientific production have been furthered by the apparition from 1986 under the aegis of the Health Ministry and of the INSERM, of a National Population Registry Committee. Cancer Registries have seriously contributed to a better knowledge of the cancer problem in our country and to describe the french specificities, in particular the importance of the mouth and pharynx cancers. They insure both a monitoring and an alert role; they also contribute to the medical supervision of the Chernobyl accident effects. French registries play a very active role concerning clinical research. They participate to many European studies of health care evaluation. In other respects, many etiological studies have been realized about professional risks of cancer, risks linked with nutritional habits, and on the etiologic role of the Tamoxifen. Finally, certain registries have created DNA banks. If nowadays their role in health planning remains modest, they very actively contribute in evaluating screening actions of breast, cervix and large bowel cancers. They also attracted the attention of Health Authorities on the cervix cancer screening's incoherencies. They evaluate the pilot project of the breast cancer and the registry of the Côte d'Or country evaluates the efficacity of a randomized colo rectal mass screening study. The main difficulties met by the registries are linked with the development of laws protecting more and more the individual freedoms, making it harder and harder the registration exhaustive character.

  13. [Hungarian Hypertension Registry].

    PubMed

    Kiss, István; Kékes, Ede

    2014-05-11

    Today, hypertension is considered endemic throughout the world. The number of individuals with high blood pressure and the increasing risk, morbidity and mortality caused by hypertension despite modern therapy do not decrease sufficiently. Hypertension has become a public health issue. Prevention and effective care require integrated datasets about many features, clinical presentation and therapy of patients with hypertension. The lack of this database in Hungary prompted the development of the registry which could help to provide population-based data for analysis. Data collection and processing was initiated by the Hungarian Society of Hypertension in 2002. Data recording into the Hungarian Hypertension Registry was performed four times (2002, 2005, 2007, 2011) and the registry currently contains data obtained from 108,473 patients. Analysis of these data indicates that 80% of the patients belong to the high or very high cardiovascular risk group. The registry provides data on cardiovascular risk of the hypertensive populations and the effectiveness of antihypertensive therapy in Hungary. Based on international experience and preliminary analysis of data from the Hungarian Hypertension Registry, establishment of hypertension registry may support the effectiveness of public health programs. A further step would be needed for proper data management control and the application of professional principles of evidence-based guidelines in the everyday practice.

  14. The Danish Stroke Registry

    PubMed Central

    Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager; Schaarup, Susanne Zielke; Gyllenborg, Jesper

    2016-01-01

    Aim of database The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. Study population All patients with acute stroke (from 2003) or TIA (from 2013) treated at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. Main variables The registry holds prospectively collected data on key processes of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients with acute stroke and TIA. Patient outcomes are currently monitored using 30-day mortality, unplanned readmission, and for patients receiving revascularization therapy, also functional level at 3 months poststroke. Descriptive data Sociodemographic, clinical, and lifestyle factors with potential prognostic impact are registered. Conclusion The Danish Stroke Registry is a well-established clinical registry which plays a key role for monitoring and improving stroke and TIA care in Denmark. In addition, the registry is increasingly used for research. PMID:27843349

  15. 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.

  16. The Swiss Orthopaedic Registry.

    PubMed

    Röder, Christoph; El-Kerdi, A; Frigg, A; Kolling, C; Staub, L P; Bach, B; Müller, U

    2005-01-01

    Following the tradition of the IDES European Hip Registry inaugurated by M. E. Müller in the 1960s, the Institute for Evaluative Research in Orthopaedic Surgery at the University of Bern started a new era of data collection using internet technology (www.memdoc.org). With support of the Swiss Orthopaedic Society, the pilot of the Swiss Orthopaedic Registry was conducted, and in cooperation with different academic and non-academic centers the practicability of integrating the various data collection instruments into the daily clinical workflow was evaluated. Three different sizes of hip and knee questionnaires were compiled, covering the individual demands of the participating hospitals whereby the smaller questionnaires always represent a subset of the next larger one. Different types of data collection instruments are available: the online interface, optical mark reader paper questionnaires, and barcode sheets. Precise implant tracking is implemented by scanning the implant barcodes directly in the operating theaters and linking them to the clinical data set via a central server. In addition, radiographic information can be linked with the clinical data set. The pilot clinics suggested enhancements to the user interface and additional features for data management. Also, recommendations were made to simplify content in some instances and diversify in others. With a new software release and adapted questionnaires the Swiss Orthopaedic Registry was officially launched in Summer 2005.

  17. HIV Medication Adherence

    MedlinePlus

    HIV Treatment HIV Medication Adherence (Last updated 3/2/2017; last reviewed 3/2/2017) Key Points Medication adherence means sticking firmly to ... Before and After Starting HIV Medicines . What is medication adherence? Adherence means “to stick firmly.” So for ...

  18. The Danish Heart Registry

    PubMed Central

    Özcan, Cengiz; Juel, Knud; Flensted Lassen, Jens; von Kappelgaard, Lene Mia; Mortensen, Poul Erik; Gislason, Gunnar

    2016-01-01

    Aim The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. Study population All adult (≥15 years) patients undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. Main variables The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR and WDHR). For each type of procedure, up to 70 variables are registered in the DHR. Since 2010, the data quality protocol encompasses fulfillment of web-based validation rules of daily-submitted records and yearly approval of the data by the EDHR and WDHR. Descriptive data The data collection on procedure has been complete for PCI and surgery since 2000, and for CAG as of 2006. From 2000 to 2014, the number of CAG, PCI, and surgical procedures changed by 231%, 193%, and 99%, respectively. Until the end of 2014, a total of 357,476 CAG, 131,309 PCI, and 60,831 surgical procedures had been performed, corresponding to 249,445, 100,609, and 55,539 first-time patients, respectively. The DHR generally has a high level of completeness (1–missing) of each procedure (>90%) when compared to the National Patient Registry. Variables important for assessing the quality of care have a high level of completeness for surgery since 2000, and for CAG and PCI since 2010. Conclusion The DHR contains valuable data on cardiac invasive procedures, which makes it an important national monitoring and quality system and at the same time serves as a platform for research projects in the cardiovascular field. PMID:27822091

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

    DTIC Science & Technology

    2009-08-19

    Approaches 18 19 Primary ADL Registry Contributors Contributor Records Entry Date Navy eLearning (US Navy) 2,086 08/05/2008 Joint Knowledge Development...ADL Registry  http://adlregistry.adlnet.gov/  Navy eLearning Content Team  https://www.netc.navy.mil/ile  Joint Knowledge Online  http

  20. I RBH - First Brazilian Hypertension Registry

    PubMed Central

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

    2016-01-01

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

  1. An H-Band Survey of B[e] Stars With the APOGEE Spectrograph

    NASA Astrophysics Data System (ADS)

    Chojnowski, S. D.; Miroshnichenko, A.; Whelan, D.; Wisniewski, J.; Stringfellow, G.; Feuillet, Di.; Holtzman, J.

    2017-02-01

    We are carrying out a high-resolution (R˜21,500), H-band survey of B[e] stars of all types via the Apache Point Observatory Galactic Evolution Experiment (APOGEE) spectrograph, a high-resolution (R˜22,500) instrument operating in the H band between 1.515-1.695 μm. Although APOGEE is normally connected to the 2.5 m Sloan Digital Sky Survey (SDSS) telescope in multi-fiber mode, a long fiber link allows it to be used with the New Mexico State University (NMSU) 1 m telescope in single-fiber mode. Our goal is to observe all northern B[e] stars with H-band magnitudes < 10, and our sample of APOGEE-observed B[e] stars currently consists of 6 objects that have all been observed multiple times with APOGEE+2.5 m, and 23 objects that have each been observed once with APOGEE+1 m. The subtypes are well-represented thus far: unclB[e] 7/29, sgB[e] 4/29, HAeB[e] 7/29, cPNB[e] 2/29, symB[e] 9/29. We present preliminary results from the survey, including plots of the spectra, discussion of line identifications, and comparison of H-band line profile morphology among the subtypes.

  2. 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.

  3. Iranian Joint Registry (Iranian National Hip and Knee Arthroplasty Registry)

    PubMed Central

    Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A.; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M.; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim

    2016-01-01

    Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran’s Ministry of Health and Education. PMID:27200403

  4. Iranian Joint Registry (Iranian National Hip and Knee Arthroplasty Registry).

    PubMed

    Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim

    2016-04-01

    Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran's Ministry of Health and Education.

  5. 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.

  6. Attitudes toward Potential Participant Registries.

    PubMed

    Grill, Joshua D; Holbrook, Andrew; Pierce, Aimee; Hoang, Dan; Gillen, Daniel L

    2017-01-01

    Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67%) individuals participated in the study. Most (78%, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26%, CI: 0.16, 0.36) or through email (38%, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28% versus 30%; p = 0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.

  7. National nephrectomy registries: Reviewing the need for population-based data.

    PubMed

    Pearson, John; Williamson, Timothy; Ischia, Joseph; Bolton, Damien M; Frydenberg, Mark; Lawrentschuk, Nathan

    2015-09-01

    Nephrectomy is the cornerstone therapy for renal cell carcinoma (RCC) and continued refinement of the procedure through research may enhance patient outcomes. A national nephrectomy registry may provide the key information needed to assess the procedure at a national level. The aim of this study was to review nephrectomy data available at a population-based level in Australia and to benchmark these data against data from the rest of the world as an examination of the national nephrectomy registry model. A PubMed search identified records pertaining to RCC nephrectomy in Australia. A similar search identified records relating to established nephrectomy registries internationally and other surgical registries of clinical importance. These records were reviewed to address the stated aims of this article. Population-based data within Australia for nephrectomy were lacking. Key issues identified were the difficulty in benchmarking outcomes and no ongoing monitoring of trends. The care centralization debate, which questions whether small-volume centers provide comparable outcomes to high-volume centers, is ongoing. Patterns of adherence and the effectiveness of existing protocols are uncertain. A review of established international registries demonstrated that the registry model can effectively address issues comparable to those identified in the Australian literature. A national nephrectomy registry could address deficiencies identified in a given nation's nephrectomy field. The model is supported by evidence from international examples and will provide the population-based data needed for studies. Scope exists for possible integration with other registries to develop a more encompassing urological or surgical registry. Need remains for further exploration of the feasibility and practicalities of initiating such a registry including a minimum data set, outcome indicators, and auditing of data.

  8. Medication adherence in schizophrenia.

    PubMed

    Acosta, Francisco Javier; Hernández, José Luis; Pereira, José; Herrera, Judit; Rodríguez, Carlos J

    2012-10-22

    Non-adherence is a major problem in the treatment of schizophrenia. Its high prevalence, potentially severe consequences and associated costs make the study of this phenomenon a priority issue. In this article, basic non-adherence concepts of prevalence, consequences, evaluation methods, methodological restrictions of available studies, risk factors and intervention strategies, are reviewed. Studying non-adherence risk factors is a necessary step toward designing adequately oriented intervention strategies. An operative definition of adherence and good knowledge of its evaluation methods are essential to study this phenomenon. Unfortunately, most available studies contain methodological restrictions, especially concerning the evaluation methods, and an agreed operative definition of adherence has only very recently been reached. Knowing non-adherence risk factors, intervention strategies and available evidence on their effectiveness is essential in making treatment decisions in daily clinical practice.

  9. Mass and Angular Momentum Loss of B[e] Stars via Decretion Disks

    NASA Astrophysics Data System (ADS)

    Krtička, J. K.; Owocki, S. P.; Kurfürst, P.

    2017-02-01

    We study the disks of B[e] stars assuming that the disks stem from the angular momentum loss from the central object. The angular momentum loss may be induced either by evolution of the stellar interior of critically rotating star or by merger event in a binary. In contrast to the usual stellar wind mass loss set by driving from the stellar luminosity, such decretion-disk mass loss is determined by the angular momentum loss needed to keep the central object in equilibrium. The angular momentum loss is given either by the interior evolution and decline in the star's moment of inertia, or by excess angular momentum present in a merging binary. Because the specific angular momentum in a Keplerian disk increases with the square root of the radius, the decretion mass loss associated with a required level of angular momentum loss depends crucially on the outer radius for viscous coupling of the disk. The magnetorotational instability can be the source of anomalous viscosity in decretion disks. The instability operates close to the star and disappears in the region where the disk orbital velocity is roughly equal to the sound speed. We study the differences between Be and B[e] star disks and discuss the reasons why stars of the stellar type B have disks, while other stars do not.

  10. ALMA observations of the supergiant B[e] star Wd1-9

    NASA Astrophysics Data System (ADS)

    Fenech, D. M.; Clark, J. S.; Prinja, R. K.; Morford, J. C.; Dougherty, S.; Blomme, R.

    2017-01-01

    Mass-loss in massive stars plays a critical role in their evolution, although the precise mechanism(s) responsible - radiatively driven winds, impulsive ejection and/or binary interaction - remain uncertain. In this Letter, we present Atacama Large Millimetre/Submillimeter Array line and continuum observations of the supergiant B[e] star Wd1-9, a massive post-main-sequence object located within the starburst cluster Westerlund 1 (Wd1). We find it to be one of the brightest stellar point sources in the sky at millimetre wavelengths, with (serendipitously identified) emission in the H41α radio recombination line. We attribute these properties to a low velocity (˜100 km s-1 ) ionized wind, with an extreme mass-loss rate ≳6.4 × 10-5(d/5 kpc)1.5 M⊙yr- 1. External to this is an extended aspherical ejection nebula indicative of a prior phase of significant mass-loss. Taken together, the millimetre properties of Wd1-9 show a remarkable similarity to those of the highly luminous stellar source MWC349A. We conclude that these objects are interacting binaries evolving away from the main sequence and undergoing rapid case-A mass transfer. As such they - and by extension the wider class of supergiant B[e] stars - may provide a unique window into the physics of a process that shapes the life-cycle of ˜70 per cent of massive stars found in binary systems.

  11. Breast and Colon Cancer Family Registries

    Cancer.gov

    The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.

  12. Integrated decision support in a hospital cancer registry.

    PubMed

    Tafazzoli, A G; Altmann, U; Bürkle, T; Hölzer, S; Dudeck, J

    2002-03-01

    In this paper we present (a) a shell for integrated knowledge-based functions that is destined to support decision processes of the users of the Giessener Tumordokumentationssystem (GTDS) and (b) some results we obtained during a 6-month observation period at one of the customers of the GTDS. A special characteristic of the provided decision support is the high degree of integration in the underlying information system GTDS, i.e. the functions are triggered by events in the patient database, existing patient data is reused as input for the reasoning process and generated alerts are presented instantly to the end-user. The first routine field of application was supporting registrars to adhere to integrity constraints as defined by the International Agency of Research on Cancer (IARC) during the documentation process. This information is important for the registrars since the checks of the IARC are an accepted standard for data quality in cancer registries. The expected benefit of this application area is less effort in achieving adherence to the specification of the IARC by preventing the costly rectification at a later time. During the last 5 months of the observation period 164 alerts were displayed. About 65% of the assessed alerts were considered to be correct. Especially, the analysis of the incorrect alerts revealed some shortcomings in the knowledge behind some of the integrity constraints of the IARC. The general feedback from the end-users indicate positive user satisfaction. Currently, the shell is in use in six hospital cancer registries.

  13. A PROLOG registry of experts

    SciTech Connect

    Ferrada, J.J.; Mashburn, S.A.; Rodgers, B.R.

    1988-01-01

    This paper discusses the use of Prolog in the construction of a user-friendly registry of consultants. This data base provides access by name, expertise, organization, or state. Also discussed are the features of this language which make it adaptable for this purpose. 3 refs., 11 figs. (LSP)

  14. 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... 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...

  15. 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... registry. (a) Once a year CMS makes available to physicians and to the general public specific information...) The laboratory registry is compiled for the calendar year preceding the date the information is...

  16. 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...

  17. 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... 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...

  18. 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... registry. (a) Once a year CMS makes available to physicians and to the general public specific information...) The laboratory registry is compiled for the calendar year preceding the date the information is...

  19. 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... General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA under this Part must be mailed to the Registry, Department of Transportation, Post Office Box...

  20. 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...

  1. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 5 2013-10-01 2013-10-01 false Laboratory registry. 493.1850 Section 493.1850... registry. (a) Once a year CMS makes available to physicians and to the general public specific information...) The laboratory registry is compiled for the calendar year preceding the date the information is...

  2. 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... General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA under this part must be mailed to the Registry, Department of Transportation, Post Office Box...

  3. 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...

  4. 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... General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA under this part must be mailed to the Registry, Department of Transportation, Post Office Box...

  5. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 5 2012-10-01 2012-10-01 false Laboratory registry. 493.1850 Section 493.1850... registry. (a) Once a year CMS makes available to physicians and to the general public specific information...) The laboratory registry is compiled for the calendar year preceding the date the information is...

  6. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 5 2014-10-01 2014-10-01 false Laboratory registry. 493.1850 Section 493.1850... registry. (a) Once a year CMS makes available to physicians and to the general public specific information...) The laboratory registry is compiled for the calendar year preceding the date the information is...

  7. The Jet from MWC 137 Points at a Supergiant B[e] Star in a Binary

    NASA Astrophysics Data System (ADS)

    Mehner, A.; de Wit, W. J.; Groh, J. H.; Oudmaijer, R. D.; Baade, D.; Rivinius, Th.; Selman, F.; Boffin, H. M. J.; Martayan, C.

    2017-02-01

    The Galactic B[e] star MWC 137 is a prime example of an object with an uncertain evolutionary classification. Previous work has suggested that is either a pre- or a post-main sequence object. Integral field spectrograph observations with the Very Large Telescope Multi Unit Spectroscopic Explorer (VLT MUSE) of the host cluster SH 2-266 are used to provide a reliable evolutionary classification. The MUSE data also allowed the discovery of a large collimated outflow, geometrically centered on MWC 137. A color-magnitude diagram analysis of the cluster promotes strongly a post-main sequence stage for MWC 137, while the existence of a jet implies the presence of an accretion disk. A SWIFT X-ray source, which may be associated with MWC 137, hints at the possibility of a neutron star companion.

  8. Evidence of the evolved nature of the B[e] star MWC 137

    SciTech Connect

    Muratore, M. F.; Arias, M. L.; Cidale, L.; Fernandes, M. Borges; Liermann, A.

    2015-01-01

    The evolutionary phase of B[e] stars is difficult to establish due to the uncertainties in their fundamental parameters. For instance, possible classifications for the Galactic B[e] star MWC 137 include pre-main-sequence and post-main-sequence phases, with a large range in luminosity. Our goal is to clarify the evolutionary stage of this peculiar object, and to study the CO molecular component of its circumstellar medium. To this purpose, we modeled the CO molecular bands using high-resolution K-band spectra. We find that MWC 137 is surrounded by a detached cool (T=1900±100 K) and dense (N=(3±1)×10{sup 21} cm{sup −2}) ring of CO gas orbiting the star with a rotational velocity, projected to the line of sight, of 84 ± 2 km s{sup −1}. We also find that the molecular gas is enriched in the isotope {sup 13}C, excluding the classification of the star as a Herbig Be. The observed isotopic abundance ratio ({sup 12}C/{sup 13}C = 25 ± 2) derived from our modeling is compatible with a proto-planetary nebula, main-sequence, or supergiant evolutionary phase. However, based on some observable characteristics of MWC 137, we propose that the supergiant scenario seems to be the most plausible. Hence, we suggest that MWC 137 could be in an extremely short-lived phase, evolving from a B[e] supergiant to a blue supergiant with a bipolar ring nebula.

  9. A renal registry for Africa: first steps

    PubMed Central

    Davids, M. Razeen; Eastwood, John B.; Selwood, Neville H.; Arogundade, Fatiu A.; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A.M.; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R.; Adu, Dwomoa

    2016-01-01

    There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries. PMID:26798479

  10. 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.

  11. 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

  12. CIRSE Vascular Closure Device Registry

    SciTech Connect

    Reekers, Jim A.; Mueller-Huelsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zelenak, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    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 (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.

  13. VLT/MUSE discovers a jet from the evolved B[e] star MWC 137

    NASA Astrophysics Data System (ADS)

    Mehner, A.; de Wit, W. J.; Groh, J. H.; Oudmaijer, R. D.; Baade, D.; Rivinius, T.; Selman, F.; Boffin, H. M. J.; Martayan, C.

    2016-01-01

    Aims: Not all stars exhibiting the optical spectral characteristics of B[e] stars are in the same evolutionary stage. The Galactic B[e] star MWC 137 is a prime example of an object with uncertain classification, where previous work has suggested either a pre- or a post-main sequence classification. Our goal is to settle this debate and provide a reliable evolutionary classification. Methods: Integral field spectrograph observations with the Very Large Telescope Multi Unit Spectroscopic Explorer (VLT MUSE) of the cluster SH 2-266 are used to analyze the nature of MWC 137. Results: A collimated outflow is discovered that is geometrically centered on MWC 137. The central position of MWC 137 in the cluster SH 2-266 within the larger nebula suggests strongly that it is a member of this cluster and that it is the origin of both the nebula and the newly discovered jet. Comparison of the color-magnitude diagram of the brightest cluster stars with stellar evolutionary models results in a distance of about 5.2 ± 1.4 kpc. We estimate that the cluster is at least 3 Myr old. The jet emanates from MWC 137 at a position angle of 18-20°. The jet extends over 66'' (1.7 pc) projected on the plane of the sky, shows several knots, and has electron densities of about 103 cm-1 and projected velocities of up to ± 450 km s-1. From the Balmer emission line decrement of the diffuse intracluster nebulosity, we determine E(B-V) = 1.4 mag for the inner 1' cluster region. The spectral energy distribution of the brightest cluster stars yields a slightly lower extinction of E(B-V) ~ 1.2 mag for the inner region and E(B-V) ~ 0.4-0.8 mag for the outer region. The extinction toward MWC 137 is estimated to be E(B-V) ~ 1.8 mag (AV ~ 5.6 mag). Conclusions: Our analysis of the optical and near-infrared color-magnitude and color-color diagrams suggests a post-main sequence stage for MWC 137. The existence of a jet in this object implies the presence of an accretion disk. Several possibilities for MWC

  14. Evidence of the Evolved Nature of the B[e] Star MWC 137

    NASA Astrophysics Data System (ADS)

    Muratore, M. F.; Kraus, M.; Oksala, M. E.; Arias, M. L.; Cidale, L.; Borges Fernandes, M.; Liermann, A.

    2015-01-01

    The evolutionary phase of B[e] stars is difficult to establish due to the uncertainties in their fundamental parameters. For instance, possible classifications for the Galactic B[e] star MWC 137 include pre-main-sequence and post-main-sequence phases, with a large range in luminosity. Our goal is to clarify the evolutionary stage of this peculiar object, and to study the CO molecular component of its circumstellar medium. To this purpose, we modeled the CO molecular bands using high-resolution K-band spectra. We find that MWC 137 is surrounded by a detached cool (T=1900+/- 100 K) and dense (N=(3+/- 1)× {{10}21} {{cm}-2}) ring of CO gas orbiting the star with a rotational velocity, projected to the line of sight, of 84 ± 2 km s-1. We also find that the molecular gas is enriched in the isotope 13C, excluding the classification of the star as a Herbig Be. The observed isotopic abundance ratio (12C/13C = 25 ± 2) derived from our modeling is compatible with a proto-planetary nebula, main-sequence, or supergiant evolutionary phase. However, based on some observable characteristics of MWC 137, we propose that the supergiant scenario seems to be the most plausible. Hence, we suggest that MWC 137 could be in an extremely short-lived phase, evolving from a B[e] supergiant to a blue supergiant with a bipolar ring nebula. Based on observations obtained at the Gemini Observatory, which is operated by the Association of Universities for Research in Astronomy, Inc., under a cooperative agreement with the NSF on behalf of the Gemini partnership: the National Science Foundation (United States), the National Research Council (Canada), CONICYT (Chile), the Australian Research Council (Australia), Ministério da Ciência, Tecnologia e Inovação (Brazil), and Ministerio de Ciencia, Tecnología e Innovación Productiva (Argentina), under program IDs GN-2011B-Q-24 and GN-2013B-Q-11.

  15. Are B[e] Stars of FS CMa-Type Related to Double Periodic Variables?

    NASA Astrophysics Data System (ADS)

    Mennickent, R.

    2017-02-01

    We have recently examined the relation between two types of intermediate-mass interacting binaries; the strongly interacting W Serpentis stars and the enigmatic double periodic variables (DPVs). In both cases, the analysis of WISE and 2MASS photometry indicates the presence of color excess that might be attributed to circumstellar matter. This is supported by the presence of Balmer emission lines and by the light curve models. However, W Serpentis stars are sometimes less massive than DPVs and usually show changes in their orbital periods. In this contribution, a third type of object has been examined, the B[e] stars of the FS CMa type, of which 30% have been found to be binaries. They are located in a similar region of the HR diagram to DPVs, but show stronger emission lines and larger color excess. Since theoretical models indicate that all these close binaries pass by epochs of strong mass loss, at least some of the FS CMa systems might be precursors of DPVs, closer to the stage of mass ratio reversal. Fundamental stellar parameters for FS CMa stars are still scarce; more studies are needed, especially spectroscopic ones, to clarify this possibility.

  16. eXtended MetaData Registry

    SciTech Connect

    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.

  17. Pittsburgh Registry of Infant Multiplets (PRIM).

    PubMed

    Strassberg, Melissa; Peters, Katherine; Marazita, Mary; Ganger, Jennifer; Watt-Morse, Margaret; Murrelle, Lenn; Tarter, Ralph; Vanyukov, Michael

    2002-10-01

    This paper describes the Pittsburgh Registry of Infant Multiplets (PRIM; Pittsburgh, Pennsylvania), the results of pilot research conducted in this registry, and the plans for future studies. The main focus of the registry is on psychological development and the risk for behavioral disorders. Particularly, characteristics associated with antisociality and the risk for substance use disorders (e.g., aggressivity, hyperactivity/impulsivity), as well as language development and other traits (e.g., dental health) are among the research targets.

  18. Vision for a Global Registry of Anticipated Public Health Studies

    PubMed Central

    Choi, Bernard C.K.; Frank, John; Mindell, Jennifer S.; Orlova, Anna; Lin, Vivian; Vaillancourt, Alain D.M.G.; Puska, Pekka; Pang, Tikki; Skinner, Harvey A.; Marsh, Marsha; Mokdad, Ali H.; Yu, Shun-Zhang; Lindner, M. Cristina; Sherman, Gregory; Barreto, Sandhi M.; Green, Lawrence W.; Svenson, Lawrence W.; Sainsbury, Peter; Yan, Yongping; Zhang, Zuo-Feng; Zevallos, Juan C.; Ho, Suzanne C.; de Salazar, Ligia M.

    2007-01-01

    In public health, the generation, management, and transfer of knowledge all need major improvement. Problems in generating knowledge include an imbalance in research funding, publication bias, unnecessary studies, adherence to fashion, and undue interest in novel and immediate issues. Impaired generation of knowledge, combined with a dated and inadequate process for managing knowledge and an inefficient system for transferring knowledge, mean a distorted body of evidence available for decisionmaking in public health. This article hopes to stimulate discussion by proposing a Global Registry of Anticipated Public Health Studies. This prospective, comprehensive system for tracking research in public health could help enhance collaboration and improve efficiency. Practical problems must be discussed before such a vision can be further developed. PMID:17413073

  19. A resolved, au-scale gas disk around the B[e] star HD 50138

    NASA Astrophysics Data System (ADS)

    Ellerbroek, L. E.; Benisty, M.; Kraus, S.; Perraut, K.; Kluska, J.; le Bouquin, J. B.; Borges Fernandes, M.; Domiciano de Souza, A.; Maaskant, K. M.; Kaper, L.; Tramper, F.; Mourard, D.; Tallon-Bosc, I.; ten Brummelaar, T.; Sitko, M. L.; Lynch, D. K.; Russell, R. W.

    2015-01-01

    HD 50138 is a B[e] star surrounded by a large amount of circumstellar gas and dust. Its spectrum shows characteristics which may indicate either a pre- or a post-main-sequence system. Mapping the kinematics of the gas in the inner few au of the system contributes to a better understanding of its physical nature. We present the first high spatial and spectral resolution interferometric observations of the Brγ line of HD 50138, obtained with VLTI/AMBER. The line emission originates in a region more compact (up to 3 au) than the continuum-emitting region. Blue- and red-shifted emission originates from the two different hemispheres of an elongated structure perpendicular to the polarization angle. The velocity of the emitting medium decreases radially. An overall offset along the NW direction between the line- and continuum-emitting regions is observed. We compare the data with a geometric model of a thin Keplerian disk and a spherical halo on top of a Gaussian continuum. Most of the data are well reproduced by this model, except for the variability, the global offset and the visibility at the systemic velocity. The evolutionary state of the system is discussed; most diagnostics are ambiguous and may point either to a post-main-sequence or a pre-main-sequence nature. Based on observations performed with X-Shooter (program 090.D-0212) and CRIRES (program 084.C-0668), mounted on the ESO Very Large Telescope, on Cerro Paranal, Chile, and AMBER mounted on the Very Large Telescope Interferometer (programs 082.C-0621, 082.C-0657, 083.C-0144, 084.C-0187, 084.C-0668, 084.C-0983, 384.D-0482, and 092.C-0376(B)).Figure 4 and Appendix A are available in electronic form at http://www.aanda.org

  20. The Italian Dystonia Registry: rationale, design and preliminary findings.

    PubMed

    Defazio, Giovanni; Esposito, M; Abbruzzese, G; Scaglione, C L; Fabbrini, G; Ferrazzano, G; Peluso, S; Pellicciari, R; Gigante, A F; Cossu, G; Arca, R; Avanzino, L; Bono, F; Mazza, M R; Bertolasi, L; Bacchin, R; Eleopra, R; Lettieri, C; Morgante, F; Altavista, M C; Polidori, L; Liguori, R; Misceo, S; Squintani, G; Tinazzi, M; Ceravolo, R; Unti, E; Magistrelli, L; Coletti Moja, M; Modugno, N; Petracca, M; Tambasco, N; Cotelli, M S; Aguggia, M; Pisani, A; Romano, M; Zibetti, M; Bentivoglio, A R; Albanese, A; Girlanda, P; Berardelli, A

    2017-02-18

    The Italian Dystonia Registry is a multicenter data collection system that will prospectively assess the phenomenology and natural history of adult-onset dystonia and will serve as a basis for future etiological, pathophysiological and therapeutic studies. In the first 6 months of activity, 20 movement disorders Italian centres have adhered to the registry and 664 patients have been recruited. Baseline historical information from this cohort provides the first general overview of adult-onset dystonia in Italy. The cohort was characterized by a lower education level than the Italian population, and most patients were employed as artisans, builders, farmers, or unskilled workers. The clinical features of our sample confirmed the peculiar characteristics of adult-onset dystonia, i.e. gender preference, peak age at onset in the sixth decade, predominance of cervical dystonia and blepharospasm over the other focal dystonias, and a tendency to spread to adjacent body parts, The sample also confirmed the association between eye symptoms and blepharospasm, whereas no clear association emerged between extracranial injury and dystonia in a body site. Adult-onset dystonia patients and the Italian population shared similar burden of arterial hypertension, type 2 diabetes, coronary heart disease, dyslipidemia, and hypothyroidism, while hyperthyroidism was more frequent in the dystonia population. Geographic stratification of the study population yielded no major difference in the most clinical and phenomenological features of dystonia. Analysis of baseline information from recruited patients indicates that the Italian Dystonia Registry may be a useful tool to capture the real world clinical practice of physicians that visit dystonia patients.

  1. Coping with the isotretinoin registry.

    PubMed

    Baldwin, Hilary E

    2006-01-01

    The isotretinoin registry has arrived. It has a lofty goal of preventing all isotretinoin pregnancies. How we got to this point and what the registry means to prescribers and patients have many dermatologists confused and concerned. Will it be burdensome, will it preclude the use in most offices of this most important drug? Will it breed a new group of "isotretinologists" who are willing to take on the challenge? This article endeavors to answer these questions and to put most concerns at rest. The new system seems ultimately to have few changes compared to the risk management program we are already (technically) following. The difference is that compliance with all the rules will be monitored and mandatory. The system seems user friendly, is accessible to the computer-savvy as well as those of us still addicted to telephone, and may well turn out to be much fuss made over minimal hassle. What is clear is that this is likely our last chance to save this wonderful drug from oblivion. It is time for dermatologists to step to the plate and do what is in the best interest of their patients.

  2. 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

  3. 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...

  4. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 50 Wildlife and Fisheries 12 2014-10-01 2014-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  5. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 50 Wildlife and Fisheries 10 2011-10-01 2011-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  6. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 50 Wildlife and Fisheries 12 2013-10-01 2013-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  7. United States Transuranium and Uranium Registries

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  8. Ethical considerations in adherence research

    PubMed Central

    Patel, Nupur U; Moore, Blake A; Craver, Rebekah F; Feldman, Steven R

    2016-01-01

    Poor adherence to treatment is a common cause of medical treatment failure. Studying adherence is complicated by the potential for the study environment to impact adherence behavior. Studies performed without informing patients about adherence monitoring must balance the risks of deception against the potential benefits of the knowledge to be gained. Ethically monitoring a patient’s adherence to a treatment plan without full disclosure of the monitoring plan requires protecting the patient’s rights and upholding the fiduciary obligations of the investigator. Adherence monitoring can utilize different levels of deception varying from stealth monitoring, debriefing after the study while informing the subject that some information had been withheld in regard to the use of adherence monitoring (withholding), informed consent that discloses some form of adherence monitoring is being used and will be disclosed at the end of the study (authorized deception), and full disclosure. Different approaches offer different benefits and potential pitfalls. The approach used must balance the risk of nondisclosure against the potential for confounding the adherence monitoring data and the potential benefits that adherence monitoring data will have for the research subjects and/or other populations. This commentary aims to define various methods of adherence monitoring and to provide a discussion of the ethical considerations that accompany the use of each method and adherence monitoring in general as it is used in clinical research. PMID:27980394

  9. Ethical considerations in adherence research.

    PubMed

    Patel, Nupur U; Moore, Blake A; Craver, Rebekah F; Feldman, Steven R

    2016-01-01

    Poor adherence to treatment is a common cause of medical treatment failure. Studying adherence is complicated by the potential for the study environment to impact adherence behavior. Studies performed without informing patients about adherence monitoring must balance the risks of deception against the potential benefits of the knowledge to be gained. Ethically monitoring a patient's adherence to a treatment plan without full disclosure of the monitoring plan requires protecting the patient's rights and upholding the fiduciary obligations of the investigator. Adherence monitoring can utilize different levels of deception varying from stealth monitoring, debriefing after the study while informing the subject that some information had been withheld in regard to the use of adherence monitoring (withholding), informed consent that discloses some form of adherence monitoring is being used and will be disclosed at the end of the study (authorized deception), and full disclosure. Different approaches offer different benefits and potential pitfalls. The approach used must balance the risk of nondisclosure against the potential for confounding the adherence monitoring data and the potential benefits that adherence monitoring data will have for the research subjects and/or other populations. This commentary aims to define various methods of adherence monitoring and to provide a discussion of the ethical considerations that accompany the use of each method and adherence monitoring in general as it is used in clinical research.

  10. One of a kind--the Pan African Clinical Trials Registry, a regional registry for Africa.

    PubMed

    Abrams, Amber L

    2011-01-01

    The 2004 Ministerial Summit on Health Research called on the World Health Organization to to establish a registry network with the intention of providing a single access point to identify trials. In 2007 the International Committee of Medical Journal Editors amended their support of this initiative stating that only trials registered prospectively on a member registry of the WHO's Network of Primary Registers would be published. The Pan African Clinical Trials Registry (www.pactr.org), was established in early 2007 as the AIDS, TB and Malaria (ATM) Clinical Trials Registry with the aim of piloting the concept of a registry that would cater to the specific needs of African trialists. In 2009 the ATM Registry expanded its remit to include all diseases for all regions of Africa; The Pan African Clinical Trials Registry became the first and is presently the only African member of the World Health Organization's Network of Primary Registers.

  11. Considerations Before Establishing an Environmental Health Registry

    PubMed Central

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

    2016-01-01

    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

  12. Central registry in psychiatry: A structured review

    PubMed Central

    Prakash, Jyoti; Ramakrishnan, TS; Das, R. C.; Srivastava, K.; Mehta, Suresh; Shashikumar, R.

    2014-01-01

    Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry. PMID:25535438

  13. [Creating a European registry of patient registries--a service oriented approach].

    PubMed

    Pajić, Vanja; Pristas, Ivan; Meglic, Matic

    2013-06-01

    Healthcare registries in European countries are producing a large amount of data that are difficult to share and which, for the lack of interoperability, do not meet the real needs of data users, i.e. various groups of researchers, professionals and patients. Also, data gathered from healthcare registries are usually considered as isolated islands of information, which makes the task of approaching these data an arduous one. The suggested solution to these problems lies in the service approach to health registries and the data contained within them. Applying the service approach to registries, the healthcare data can escape the narrow confines of health registries in which they reside by transforming them into packages of predefined services in accordance with the end-user needs, which introduces the concept of metadata registries as service catalogues. Such a model of a service-oriented metadata registry as a catalog of services is discussed here as a real possibility and a dire need. The purpose of such a metadata registry is the collection of relevant data from the service provider and delivery of a predefined and reusable set of services to the service consumer. Interoperability thus achieved transcends the traditional problems of data exchange because it comes to grips with the services intended for and defined by the end-user, and not relying solely on data as a final deliverable. At the European Union level, such a metadata registry is currently under development, with the working title PARENT (Patient Registry Initiative) 'Registry of registries'. The mission of this metadata registry is to combine all the relevant European patient registries into such a service-oriented model.

  14. Medication adherence: process for implementation

    PubMed Central

    Mendys, Phil; Zullig, Leah L; Burkholder, Rebecca; Granger, Bradi B; Bosworth, Hayden B

    2014-01-01

    Improving medication adherence is a critically important, but often enigmatic objective of patients, providers, and the overall health care system. Increasing medication adherence has the potential to reduce health care costs while improving care quality, patient satisfaction and health outcomes. While there are a number of papers that describe the benefits of medication adherence in terms of cost, safety, outcomes, or quality of life, there are limited reviews that consider how best to seamlessly integrate tools and processes directed at improving medication adherence. We will address processes for implementing medication adherence interventions with the goal of better informing providers and health care systems regarding the safe and effective use of medications. PMID:25114513

  15. Observational constraints for the circumstellar disk of the B[e] star CPD-52 9243

    NASA Astrophysics Data System (ADS)

    Cidale, L. S.; Borges Fernandes, M.; Andruchow, I.; Arias, M. L.; Kraus, M.; Chesneau, O.; Kanaan, S.; Curé, M.; de Wit, W. J.; Muratore, M. F.

    2012-12-01

    Context. The formation and evolution of gas and dust environments around B[e] supergiants are still open issues. Aims: We intend to study the geometry, kinematics and physical structure of the circumstellar environment (CE) of the B[e] supergiant CPD-52 9243 to provide further insights into the underlying mechanism causing the B[e] phenomenon. Methods: The influence of the different physical mechanisms acting on the CE (radiation pressure, rotation, bi-stability or tidal forces) is somehow reflected in the shape and kinematic properties of the gas and dust regions (flaring, Keplerian, accretion or outflowing disks). To investigate these processes we mainly used quasi-simultaneous observations taken with high spatial resolution optical long-baseline interferometry (VLTI/MIDI), near-IR spectroscopy of CO bandhead features (Gemini/Phoenix and VLT/CRIRES) and optical spectra (CASLEO/REOSC). Results: High angular resolution interferometric measurements obtained with VLTI/MIDI provide strong support for the presence of a dusty disk(ring)-like structure around CPD-52 9243, with an upper limit for its inner edge of ~8 mas (~27.5 AU, considering a distance of 3.44 kpc to the star). The disk has an inclination angle with respect to the line of sight of 46 ± 7°. The study of CO first overtone bandhead evidences a disk structure in Keplerian rotation. The optical spectrum indicates a rapid outflow in the polar direction. Conclusions: The IR emission (CO and warm dust) indicates Keplerian rotation in a circumstellar disk while the optical line transitions of various species are consistent with a polar wind. Both structures appear simultaneously and provide further evidence for the proposed paradigms of the mass-loss in supergiant B[e] stars. The presence of a detached cold CO ring around CPD-52 9243 could be due to a truncation of the inner disk caused by a companion, located possibly interior to the disk rim, clearing the center of the system. More spectroscopic and

  16. The galactic unclassified B[e] star HD 50138. I. A possible new shell phase

    NASA Astrophysics Data System (ADS)

    Borges Fernandes, M.; Kraus, M.; Chesneau, O.; Domiciano de Souza, A.; de Araújo, F. X.; Stee, P.; Meilland, A.

    2009-12-01

    Context: The observed spectral variation of HD 50138 has led different authors to classify it in a very wide range of spectral types and luminosity classes (from B5 to A0 and III to Ia) and at different evolutionary stages as either HAeBe star or classical Be. Aims: Based on new high-resolution optical spectroscopic data from 1999 and 2007 associated to a photometric analysis, the aim of this work is to provide a deep spectroscopic description and a new set of parameters for this unclassified southern B[e] star and its interstellar extinction. Methods: From our high-resolution optical spectroscopic data separated by 8 years, we perform a detailed spectral description, presenting the variations seen and discussing their possible origin. We derive the interstellar extinction to HD 50138 by taking the influences of the circumstellar matter in the form of dust and an ionized disk into account. Based on photometric data from the literature and the new Hipparcos distance, we obtain a revised set of parameters for HD 50138. Results: Because of the spectral changes, we tentatively suggest that a new shell phase could have taken place prior to our observations in 2007. We find a color excess value of E(B-V) = 0.08 mag, and from the photometric analysis, we suggest that HD 50138 is a B6-7 III-V star. A discussion of the different evolutionary scenarios is also provided. Based on observations: (i) with the 1.52-m and 2.2-m telescopes at the European Southern Observatory (La Silla, Chile), under agreement with the Observatório Nacional-MCT (Brazil); and (ii) with the Telescope Bernard Lyot, Observatory of Pic du Midi (France). Table 1 is only available in electronic form at the CDS via anonymous ftp to cdsarc.u-strasbg.fr (130.79.128.5) or via http://cdsweb.u-strasbg.fr/cgi-bin/qcat?J/A+A/508/309 It is with great sadness that we have to report that, during the final stages of this paper, we had a deep loss when Francisco X. de Araújo passed away.

  17. 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

  18. X-Ray Flare Characteristics in the B2e Star Lambda Eridani (ROSAT)

    NASA Technical Reports Server (NTRS)

    Smith, Myron A.

    1997-01-01

    We document the results of a simultaneous wavelength monitoring on the B2e star (lambda) Eri. This campaign was carried out from ground stations and with the ROSAT, ASCA, IUE, and Voyager 2 space platforms during a week in February-March 1995; a smaller follow-up was conducted in September 1995. During the first of these intervals (lambda) Eri exhibited extraordinary wind and disk-ejection activity. The ROSAT/HRI X-ray light curves showed no large flares such as the one the ROSAT/PSCA observed in 1991. However, possible low level fluctuations in the February-March ROSAT data occurred at the same time as unusual activity in H(alpha) He I (lambda)6678, He II (lambda)1640, and the C IV doublet. For example, the hydrogen and helium lines exhibited an emission in the blue half of their profiles, probably lasting several hours. The C IV lines showed a strong high-velocity Discrete Absorption Component (DAC) accompanied by unusually strong absorption at lower velocities. The helium line activity suggests that a mass ejection occurred at the base of the wind while the strong C III (Voyager) and C IV (IUE) lines implies that shock interactions occurred in the wind flow. It is not clear that the X-ray elevations are directly related to the strong C IV absorptions because the former changed on a much more rapid timescale than absorptions in the C IV lines. Within hours of the mild X-ray flux variations found by ROSAT on February 28, the Voyager UVS observed a "ringing" that decayed over three 3-hr. cycles. The amplitude of these fluctuations was strong (50%) at (lambda)(lambda)950-1100, decreased rapidly with wavelength, and faded to nondetection longward of (lambda)1300. Various considerations indicate that these continuum variations were not due to an instrumental pathology in the UVS. Rather, they appear to be due to a time-dependent flux deficit in the (lambda)(lambda)950-1250 region. We outline a scenario in which a dense plasma structure over the star's surface is

  19. Correlates of Pediatric CPAP Adherence

    PubMed Central

    Hawkins, Stephen M.M.; Jensen, Emily L.; Simon, Stacey L.; Friedman, Norman R.

    2016-01-01

    Study Objectives: Obstructive sleep apnea (OSA) is a common pediatric condition characterized by recurrent partial or complete cessation of airflow during sleep, typically due to inadequate upper airway patency. Continuous positive airway pressure (CPAP) is a therapeutic option that reduces morbidity. Despite efforts to promote use, CPAP adherence is poor in both pediatric and adult populations. We sought to determine whether demographics, insurance status, OSA severity, therapeutic pressure, or comorbid conditions were associated with pediatric CPAP adherence. Methods: A retrospective review of adherence download data was performed on all pediatric patients with initiation or adjustment of CPAP treatment over a one-year period with documented in-laboratory CPAP titration. Patients were grouped as CPAP adherent or non-adherent, where adherence was defined as > 70% nightly use and average usage ≥ 4 hours per night. Differences between the groups were analyzed by χ2 test. Results: Overall, nearly half of participants were CPAP adherent (49%, 69/140). Of the demographic data collected (age, ethnicity, sex, insurance status), only female sex was associated with better adherence (60.9% vs 39.5% of males adherent; odds ratio [OR] = 2.41, 95%CI = 1.20–4.85; p = 0.01). Severity of OSA (diagnostic apnea-hypopnea index [AHI] and degree of hypoxemia), therapeutic pressure, and residual AHI did not impact CPAP adherence (p > 0.05). Patients with developmental delay (DD) were more likely to be adherent with CPAP than those without a DD diagnosis (OR = 2.55, 95%CI = 1.27–5.13; p = 0.007). Female patients with trisomy 21 tended to be more adherent, but this did not reach significance or account for the overall increased adherence associated with female sex. Conclusions: Our study demonstrates that adherence to CPAP therapy is poor but suggests that female sex and developmental delay are associated with better adherence. These findings support efforts to understand the

  20. 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...

  1. 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...

  2. 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...

  3. 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...

  4. 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...

  5. 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...

  6. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 48 Federal Acquisition Regulations System 1 2011-10-01 2011-10-01 false Disaster Response Registry... Response Registry. (a) Contracting officers shall consult the Disaster Response Registry at www.ccr.gov to... prospective vendors voluntarily participating in the Disaster Response Registry can be retrieved using the...

  7. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 29 Labor 3 2011-07-01 2011-07-01 false Establishment of registry. 500.170 Section 500.170 Labor... SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment of registry. The Administrator shall establish a central public registry of all persons issued a...

  8. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 48 Federal Acquisition Regulations System 1 2014-10-01 2014-10-01 false Disaster Response Registry... Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via https://www...) A list of prospective vendors voluntarily participating in the Disaster Response Registry can...

  9. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 29 Labor 3 2010-07-01 2010-07-01 false Establishment of registry. 500.170 Section 500.170 Labor... SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment of registry. The Administrator shall establish a central public registry of all persons issued a...

  10. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 48 Federal Acquisition Regulations System 1 2013-10-01 2013-10-01 false Disaster Response Registry... Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via https://www...) A list of prospective vendors voluntarily participating in the Disaster Response Registry can...

  11. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 29 Labor 3 2012-07-01 2012-07-01 false Establishment of registry. 500.170 Section 500.170 Labor... SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment of registry. The Administrator shall establish a central public registry of all persons issued a...

  12. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 22 Foreign Relations 1 2012-04-01 2012-04-01 false Operation of the Complaint Registry. 96.70... Complaints § 96.70 Operation of the Complaint Registry. (a) The Secretary will establish a Complaint Registry.... The Secretary may provide for the Complaint Registry to be funded in whole or in part from...

  13. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 48 Federal Acquisition Regulations System 1 2012-10-01 2012-10-01 false Disaster Response Registry... Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via https://www...) A list of prospective vendors voluntarily participating in the Disaster Response Registry can...

  14. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 48 Federal Acquisition Regulations System 1 2010-10-01 2010-10-01 false Disaster Response Registry... Response Registry. (a) Contracting officers shall consult the Disaster Response Registry at www.ccr.gov to... prospective vendors voluntarily participating in the Disaster Response Registry can be retrieved using the...

  15. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 29 Labor 3 2013-07-01 2013-07-01 false Establishment of registry. 500.170 Section 500.170 Labor... SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment of registry. The Administrator shall establish a central public registry of all persons issued a...

  16. 78 FR 28124 - Registry for Attorneys and Representatives

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-05-14

    ... Executive Office for Immigration Review 8 CFR Part 1292 RIN 1125-AA39 Registry for Attorneys and... established a mandatory electronic registry for attorneys and accredited representatives who practice before... mandatory electronic registry (eRegistry) for attorneys \\1\\ and accredited representatives \\2\\ who...

  17. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 22 Foreign Relations 1 2011-04-01 2011-04-01 false Operation of the Complaint Registry. 96.70... Complaints § 96.70 Operation of the Complaint Registry. (a) The Secretary will establish a Complaint Registry.... The Secretary may provide for the Complaint Registry to be funded in whole or in part from...

  18. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 29 Labor 3 2014-07-01 2014-07-01 false Establishment of registry. 500.170 Section 500.170 Labor... SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment of registry. The Administrator shall establish a central public registry of all persons issued a...

  19. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 22 Foreign Relations 1 2014-04-01 2014-04-01 false Operation of the Complaint Registry. 96.70... Complaints § 96.70 Operation of the Complaint Registry. (a) The Secretary will establish a Complaint Registry.... The Secretary may provide for the Complaint Registry to be funded in whole or in part from...

  20. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 22 Foreign Relations 1 2013-04-01 2013-04-01 false Operation of the Complaint Registry. 96.70... Complaints § 96.70 Operation of the Complaint Registry. (a) The Secretary will establish a Complaint Registry.... The Secretary may provide for the Complaint Registry to be funded in whole or in part from...

  1. Adherence to antiepilepsy drug therapy.

    PubMed

    Faught, Edward

    2012-11-01

    Adherence to antiepilepsy drug (AED) therapy is critical for effective disease management, yet adherence and persistence rates are low due to several barriers. The definitions of adherence (80% rate of total pills taken, medication possession ratio, and days covered by prescriptions filled) and methods of measurement (patient self-reports, serum drug levels, pill counts, electronic bottle tops, and reviews of pharmacy records) are not without limitations, and their applicability to epilepsy is not clear. The use of simple adherence scales during office visits can provide an overall impression of a patient's adherence and can serve as a basis for practitioner-patient dialog. Efforts to improve adherence should focus on provider and healthcare system determinants versus those focused only on the patient. These interventions include non-judgmental communication, patient education, simplification of the dosage regimen with once-daily therapies, and the use of patient reminders.

  2. EPA Facility Registry Service (FRS): Power Plants

    EPA Pesticide Factsheets

    This GIS dataset contains data on power plants, based on the Energy Information Administration's EIA-860 dataset and supplemented with data from EPA's Facility Registry Service (FRS) compiled from various EPA programs.

  3. Airborne Hazards and Open Burn Pit Registry

    MedlinePlus

    ... 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. The Registry will work in JavaScript-enabled ...

  4. 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.

  5. [Registries of myocardial infarction in Germany. Consequences for drug therapy of patients with acute ST elevation myocardial infarction].

    PubMed

    Zeymer, U; Zahn, R; Senges, J; Gitt, A

    2010-10-01

    Current national and international guidelines for patients with ST elevation myocardial infarction (STEMI) are mainly based on the results of randomised clinical trials. However, it is well perceived that patients in such trials often represent a low risk population. Therefore the results of randomised clinical trials are not necessarily applicable to patients in clinical practice. This gap can be filled by prospective registries. Since the early nineties a number of prospective large registries in patients with STEMI have been performed in Germany. It could be shown that guideline adherent acute therapies and secondary prevention therapies were associated with an improvement in inhospital and mid-term outcomes. The benefit of guideline adherent therapy observed was especially high in patients with higher baseline risk. Registries are not able to replace randomised clinical trials, but can help to test if the results of these trials are comprehensible in clinical practice. Therefore prospective STEMI registries are an important part of clinical research to optimize therapies and improve outcome in patients with STEMI.

  6. Adherence as a language game.

    PubMed

    Kolberg, Espen Skarstein

    2017-03-02

    Non-adherence, i.e. medication intake behavior not corresponding with agreed recommendations, is associated with increased morbidity and death, and it has been estimated that as many as 50% of patients in developed countries are not taking their medications as prescribed. But even as efforts in improving medication adherence over the years have increased, results are inconsistent, with only a minority of clinical trials showing any improvement in both adherence and clinical outcome. Since patient education is central to promoting good medication adherence, and language is integral to education, perhaps an exploration of the meaning and use of language, using the philosophy of Ludwig Wittgenstein, is in order.

  7. Use of registry employees can pose legal problems.

    PubMed

    Hoffman, S F

    1994-07-01

    In view of the potential legal liability to which a recipient entity can be exposed when using registry employees, some care must be taken in drafting registry contract services and in modulating the recipient entity's behavior towards the registry personnel. The following steps should generally be taken by health care establishments purchasing registry services to minimize such exposure: (1) Ensure that the registry treats its personnel as employees and complies with all applicable employment law obligations, including state and federal employment tax requirements, workers' compensation laws, and any state law wage and hour requirements in the recipient's state. (2) If using an out-of-state registry, make sure that the registry also has workers' compensation insurance in the recipient's state and complies with that state workers' compensation laws. (3) Make sure that termination decisions regarding registry employees are not made for reasons that violate any federal anti-discrimination laws. (4) Provide in the registry agreement for full indemnification by the registry to the recipient. (5) Ensure that the registry is solvent and has adequate insurance to honor its indemnification obligation. (6) Obtain a warranty from the registry that it carefully screens all of its employees before hiring them. (7) Expressly state in the registry agreement that the registry has the right to discipline and supervise the personnel it refers. (8) Do not reject registry personnel for reasons that would be improper with respect to the facility's own employees, e.g., race, sex, age, religion, disability, etc.

  8. Clonogenic Assay: Adherent Cells

    PubMed Central

    Rafehi, Haloom; Orlowski, Christian; Georgiadis, George T.; Ververis, Katherine; El-Osta, Assam; Karagiannis, Tom C.

    2011-01-01

    The clonogenic (or colony forming) assay has been established for more than 50 years; the original paper describing the technique was published in 19561. Apart from documenting the method, the initial landmark study generated the first radiation-dose response curve for X-ray irradiated mammalian (HeLa) cells in culture1. Basically, the clonogenic assay enables an assessment of the differences in reproductive viability (capacity of cells to produce progeny; i.e. a single cell to form a colony of 50 or more cells) between control untreated cells and cells that have undergone various treatments such as exposure to ionising radiation, various chemical compounds (e.g. cytotoxic agents) or in other cases genetic manipulation. The assay has become the most widely accepted technique in radiation biology and has been widely used for evaluating the radiation sensitivity of different cell lines. Further, the clonogenic assay is commonly used for monitoring the efficacy of radiation modifying compounds and for determining the effects of cytotoxic agents and other anti-cancer therapeutics on colony forming ability, in different cell lines. A typical clonogenic survival experiment using adherent cells lines involves three distinct components, 1) treatment of the cell monolayer in tissue culture flasks, 2) preparation of single cell suspensions and plating an appropriate number of cells in petri dishes and 3) fixing and staining colonies following a relevant incubation period, which could range from 1-3 weeks, depending on the cell line. Here we demonstrate the general procedure for performing the clonogenic assay with adherent cell lines with the use of an immortalized human keratinocyte cell line (FEP-1811)2. Also, our aims are to describe common features of clonogenic assays including calculation of the plating efficiency and survival fractions after exposure of cells to radiation, and to exemplify modification of radiation-response with the use of a natural antioxidant

  9. Measurement of Psychiatric Treatment Adherence

    PubMed Central

    Sajatovic, Martha; Velligan, Dawn; Weiden, Peter J.; Valenstein, Marcia; Ogedegbe, Gbenga

    2014-01-01

    Objective Nonadherence to medications for mental disorders substantially limits treatment effectiveness and results in higher rates of relapse, hospitalization, and disability. Accurate measurement of medication adherence is important not only in adherence research, but also in clinical trials in which medications are being evaluated, and in clinical practice where failure to detect nonadherence results in premature medication changes, unnecessary polypharmacy, and greater likelihoods of functional deteriorations and hospitalizations. This is a review of psychiatric treatment adherence methods and measures arising from a meeting on “Methodological Challenges in Psychiatric Treatment Adherence Research” held on September 27-28, 2007 in Bethesda, MD and organized by the National Institute of Mental Health (NIMH). Methods This paper reviews the range of modalities currently available for assessing adherence behavior including pill counts, pharmacy records, technology-assisted monitoring, biological assays, and a range of self-report and interviewer-rated scales. Measures of adherence attitudes are also reviewed. Results Each of the adherence measures described are imperfect estimates of actual medication ingestion but each provides informative estimates of adherence or the attitudinal factors associated with adherence. Measure selection depends on a range of factors including the patient sample, the context in which the measure is being used, and the clinical outcomes expected from various levels of nonadherence. The use of multiple measures of adherence is encouraged to balance the limitations of individual measures. Conclusion While adherence assessment has become increasingly sophisticated in recent years there remains a need for refinement and expansion on currently available methods and measures. PMID:21109048

  10. [German resuscitation registry : science and resuscitation research].

    PubMed

    Gräsner, J-T; Seewald, S; Bohn, A; Fischer, M; Messelken, M; Jantzen, T; Wnent, J

    2014-06-01

    Sudden death due to cardiac arrest represents one of the greatest challenges facing modern medicine, not only because of the massive number of cases involved but also because of its tremendous social and economic impact. For many years, the magic figure of 1 per 1000 inhabitants per year was generally accepted as an estimate of the annual incidence of sudden death in the industrialized world, with a survival rate of 6 %. This estimate was based on large numbers of published reports of local, regional, national and multinational experience in the management of cardiac arrest. Measuring the global incidence of cardiac arrest is challenging as many different definitions of patient populations are used. Randomized controlled trials (RCT) provide insights into the value of specific treatments or treatment strategies in a well-defined section of a population. Registries do not compete with clinical studies, but represent a useful supplement to them. Surveys and registries provide insights into the ways in which scientific findings and guidelines are being implemented in clinical practice. However, as with clinical studies, comprehensive preparations are needed in order to establish a registry. This is all the more decisive because not all of the questions that may arise are known at the time when the registry is established. The German resuscitation registry started in May 2007 and currently more than 230 paramedic services and hospitals take part. More than 45,000 cases of out-of-hospital cardiac arrest and in-hospital cardiac arrest are included. With this background the German resuscitation registry is one of the largest databases in emergency medicine in Germany. After 5 years of running the preclinical care dataset was revised in 2012. Data variables that reflect current or new treatment were added to the registry. The postresuscitation basic care and telephone cardiopulmonary resuscitation (CPR) datasets were developed in 2012 and 2013 as well. The German

  11. Secondary preventive medication persistence and adherence 1 year after stroke

    PubMed Central

    Olson, D.M.; Zhao, X.; Pan, W.; Zimmer, L.O.; Goldstein, L.B.; Alberts, M.J.; Fagan, S.C.; Fonarow, G.C.; Johnston, S.C.; Kidwell, C.; LaBresh, K.A.; Ovbiagele, B.; Schwamm, L.; Peterson, E.D.

    2011-01-01

    Objective: Data on long-term use of secondary prevention medications following stroke are limited. The Adherence eValuation After Ischemic stroke–Longitudinal (AVAIL) Registry assessed patient, provider, and system-level factors influencing continuation of prevention medications for 1 year following stroke hospitalization discharge. Methods: Patients with ischemic stroke or TIA discharged from 106 hospitals participating in the American Heart Association Get With The Guidelines–Stroke program were surveyed to determine their use of warfarin, antiplatelet, antihypertensive, lipid-lowering, and diabetes medications from discharge to 12 months. Reasons for stopping medications were ascertained. Persistence was defined as continuation of all secondary preventive medications prescribed at hospital discharge, and adherence as continuation of prescribed medications except those stopped according to health care provider instructions. Results: Of the 2,880 patients enrolled in AVAIL, 88.4% (2,457 patients) completed 1-year interviews. Of these, 65.9% were regimen persistent and 86.6% were regimen adherent. Independent predictors of 1-year medication persistence included fewer medications prescribed at discharge, having an adequate income, having an appointment with a primary care provider, and greater understanding of why medications were prescribed and their side effects. Independent predictors of adherence were similar to those for persistence. Conclusions: Although up to one-third of stroke patients discontinued one or more secondary prevention medications within 1 year of hospital discharge, self-discontinuation of these medications is uncommon. Several potentially modifiable patient, provider, and system-level factors associated with persistence and adherence may be targets for future interventions. PMID:21900638

  12. [Treatment adherence: a key element].

    PubMed

    Bastida, Guillermo; Sánchez Montes, Cristina; Aguas, Mariam

    2011-12-01

    A substantial percentage of patients fail to follow health professionals' recommendations, which affects the management of chronic diseases, reducing the effectiveness of therapeutic interventions and increasing the costs of the disease. Lack of adherence is a multidimensional phenomenon and is influenced by numerous factors that should be identified. A multiplicity of measures is available to improve adherence, such as simplifying treatment administration, but none of these measures is effective when used alone. One way of tackling lack of adherence is by identifying patients' barriers to medication and involving them in decision making. Ulcerative colitis (UC) poses a risk for lack of treatment adherence. In this disease, poor adherence correlates with poor disease control (drug effectiveness) and with higher costs. As in other chronic diseases, the causes associated with poor adherence are multiple, including psychosocial factors, the physician-patient relationship and patients' prejudices toward medication. A single dose of aminosalycylates (5-ASA) should be recommended, as this dose is as safe and effective as other regimens. However, by itself, this recommendation does not seem to improve adherence. Identifying the scale of the problem and developing strategies to involve the patient in decision making is crucial to improve treatment adherence.

  13. Biologic Influences on Exercise Adherence.

    ERIC Educational Resources Information Center

    Dishman, Rod K.

    1981-01-01

    Diagnostic profiles of 362 male participants in an exercise program were analyzed to determine the biological variables between exercise adherence and symptoms of coronary disease. Findings indicated that individuals with lower metabolic capacity tended to adhere longer, to be less fit, were leaner, and began with more symptoms related to coronary…

  14. Optimizing adherence to antiretroviral therapy

    PubMed Central

    Sahay, Seema; Reddy, K. Srikanth; Dhayarkar, Sampada

    2011-01-01

    HIV has now become a manageable chronic disease. However, the treatment outcomes may get hampered by suboptimal adherence to ART. Adherence optimization is a concrete reality in the wake of ‘universal access’ and it is imperative to learn lessons from various studies and programmes. This review examines current literature on ART scale up, treatment outcomes of the large scale programmes and the role of adherence therein. Social, behavioural, biological and programme related factors arise in the context of ART adherence optimization. While emphasis is laid on adherence, retention of patients under the care umbrella emerges as a major challenge. An in-depth understanding of patients’ health seeking behaviour and health care delivery system may be useful in improving adherence and retention of patients in care continuum and programme. A theoretical framework to address the barriers and facilitators has been articulated to identify problematic areas in order to intervene with specific strategies. Empirically tested objective adherence measurement tools and approaches to assess adherence in clinical/ programme settings are required. Strengthening of ART programmes would include appropriate policies for manpower and task sharing, integrating traditional health sector, innovations in counselling and community support. Implications for the use of theoretical model to guide research, clinical practice, community involvement and policy as part of a human rights approach to HIV disease is suggested. PMID:22310817

  15. Antidepressant adherence after psychiatric hospitalization

    PubMed Central

    Zivin, Kara; Ganoczy, Dara; Pfeiffer, Paul N.; Miller, Erin M.; Valenstein, Marcia

    2010-01-01

    Objective Depressed patients discharged from psychiatric hospitalizations face increased risks for adverse outcomes including suicide, yet antidepressant adherence rates during this high-risk period are unknown. Using Veterans Affairs (VA) data, we assessed antidepressant adherence and predictors of poor adherence among depressed veterans following psychiatric hospitalization. Method We identified VA patients nationwide with depressive disorders who had a psychiatric hospitalization between April 1, 1999 and September 30, 2003, received antidepressant medication, and had an outpatient appointment following discharge. We calculated medication possession ratios (MPRs), a measure of medication adherence, within three and six months following discharge. We assessed patient factors associated with having lower levels of adherence (MPRs <0.8) after discharge. Results 20,931 and 23,182 patients met criteria for three and six month MPRs. The mean three month MPR was 0.79 (s.d.=0.37). The mean six month MPR was 0.66 (s.d.=0.40). Patients with poorer adherence were male, younger, non-white, and had a substance abuse disorder, but were less likely to have PTSD or other anxiety disorders. Conclusion Poor antidepressant adherence is common among depressed patients after psychiatric hospitalization. Efforts to improve adherence at this time may be critical in improving the outcomes of these high-risk patients. PMID:19609666

  16. 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.

  17. Database and Registry Research in Orthopaedic Surgery: Part 2: Clinical Registry Data.

    PubMed

    Pugely, Andrew J; Martin, Christopher T; Harwood, Jared; Ong, Kevin L; Bozic, Kevin J; Callaghan, John J

    2015-11-04

    The use of large-scale national databases for observational research in orthopaedic surgery has grown substantially in the last decade, and the data sets can be categorized as either administrative claims or clinical registries. Clinical registries contain secondary data on patients with a specific diagnosis or procedure. The data are typically used for patient outcome surveillance to improve patient safety and health-care quality. Registries used in orthopaedic research exist at the regional, national, and international levels, and many were designed to specifically collect outcomes relevant to orthopaedics, such as short-term surgical complications, longer-term outcomes (implant survival or reoperations), and patient-reported outcomes. Although heterogeneous, clinical registries-in contrast to claims data-typically have a more robust list of variables, with relatively precise prospective data input, management infrastructure, and reporting systems. Some weaknesses of clinical registries include a smaller number of patients, inconstant follow-up duration, and use of sampling methods that may limit generalizability. Within the U.S., national joint registry adoption has lagged international joint registries. Given the changing health-care environment, it is likely that clinical registries will provide valuable information that has the potential to influence clinical practice improvement and health-care policy in the future.

  18. Comparison of cancer diagnoses between the US solid organ transplant registry and linked central cancer registries.

    PubMed

    Yanik, Elizabeth L; Nogueira, Leticia M; Koch, Lori; Copeland, Glenn; Lynch, Charles F; Pawlish, Karen S; Finch, Jack L; Kahn, Amy R; Hernandez, Brenda Y; Segev, Dorry L; Pfeiffer, Ruth M; Snyder, Jon J; Kasiske, Bertram L; Engels, Eric A

    2016-04-07

    US transplant centers are required to report cancers in transplant recipients to the transplant network. The accuracy and completeness of these data, collected in the Scientific Registry of Transplant Recipients (SRTR), are unknown. We compared diagnoses in the SRTR and 15 linked cancer registries, for colorectal, liver, lung, breast, prostate, and kidney cancers, melanoma, and non-Hodgkin lymphoma (NHL). Among 187,384 transplants, 9323 cancers were documented in the SRTR or cancer registries. Only 36.8% of cancers were in both, with 47.5% and 15.7% of cases additionally documented solely in cancer registries or the SRTR, respectively. Agreement between the SRTR and cancer registries varied (kappa: 0.28 for liver cancer, 0.52-0.66 for lung, prostate, kidney, colorectum and breast cancers). Upon evaluation, some NHLs documented only in cancer registries were identified in the SRTR as another type of post-transplant lymphoproliferative disorder. Some SRTR-only cases were explained by miscoding (colorectal cancer instead of anal cancer, metastases as lung or liver cancers) or missed matches with cancer registries, partly due to out-migration from their catchment areas. Estimated sensitivity for identifying cancer was 52.5% for the SRTR and 84.3% for cancer registries. In conclusion, SRTR cancer data are substantially incomplete, limiting their usefulness for surveillance and research. This article is protected by copyright. All rights reserved.

  19. The Egyptian clinical trials' registry profile: Analysis of three trial registries (International Clinical Trials Registry Platform, Pan-African Clinical Trials Registry and clinicaltrials.gov).

    PubMed

    Zeeneldin, Ahmed A; Taha, Fatma M

    2016-01-01

    Registering clinical trials (CTs) in public domains enhances transparency, increases trust in research, improves participation and safeguards against publication bias. This work was done to study the profile of clinical research in Egypt in three CT registries with different scopes: the WHO International CT Registry Platform (ICTRP), the continental Pan-African CT Registry (PACTR) and the US clinicaltrials.gov (CTGR). In March 2014, ICTRP, PACTR and CTGR were searched for clinical studies conducted in Egypt. It was found that the number of studies conducted in Egypt (percentage) was 686 (0.30%) in ICTRP, 56 (11.3%) in PACTR and 548 (0.34%) in CTGR. Most studies were performed in universities and sponsored by university/organization, industry or individual researchers. Inclusion of adults from both genders predominated. The median number of participants per study in the three registries ranged between 63 and 155. The conditions researched differed among the three registries and study purpose was mostly treatment followed by prevention. Endpoints were mostly efficacy followed by safety. Observational:Interventional studies (i.e. clinical trials) represented 15.5%:84.5% in ICTRP, 0%:100% in PACTR and 16.4%:83.6% in CTGR. Most interventions were drugs or procedures. Observational studies were mostly prospective and cohort studies. Most CTs were phase 3 and tested drugs or procedures. Parallel group assignment and random allocation predominated. Blinding was implemented in many of trials and was mostly double-blind. We conclude that CTs from Egypt in trial registries are apparently low and do not accurately reflect clinical research conducted in Egypt or its potential. Development of an Egyptian CT registry is eagerly needed. Registering all Egyptian CTs in public domains is highly recommended.

  20. [Strategies to improve medication adherence].

    PubMed

    Laufs, U; Böhm, M; Kroemer, H K; Schüssel, K; Griese, N; Schulz, M

    2011-08-01

    Up to 50 % of patients with chronic diseases do not take their medication regularly. Poor adherence to drug therapy is associated with higher morbidity and mortality. A selective literature search using the terms adherence, compliance, concordance, persistence, medication management, and pharmaceutical care was performed. Evidence for improving adherence has been provided for the following principles: individual counselling of patients and care givers, medication management including simplifying dosing and use of combination tablets as well as the use of individual unit doses, e. g. blister cards. The effectiveness has only been shown for the duration of the interventions. The improvement of medication adherence represents an area of research with high impact on outcomes and cost. Measures to improve adherence may be as important as the development of novel therapies. However, prospective clinical evaluations with clinical endpoints are missing especially for the German health care system in order to develop recommendations for clinical practice. Joint efforts of physicians and pharmacists are needed.

  1. Fifty-year anniversary of the Vietnam Vascular Registry and a historic look at vascular registries.

    PubMed

    Hata, Kai W; Propper, Brandon; Rich, Norman

    2017-01-01

    The management of arterial injuries has evolved from simple cauterization of the time of Ambrose Paré to the more complex repairs of today. Through history there has been much learned from combat regarding the management of vascular injuries. Starting in World War I, vascular registries have been established to further study and refine the management of these injuries. One of the most pivotal registries was the Vietnam Vascular Registry established by Dr Norman Rich. The lessons learned from these registries have been carried on to the current conflicts with the establishment of the Global War on Terror Vascular Initiative. We compare 100 lower extremity vascular injuries from the Vietnam Vascular Registry to 100 injuries in the Global War on Terror Vascular Initiative database as we continue to improve the future with lessons from our past.

  2. The importance of inhaler devices: the choice of inhaler device may lead to suboptimal adherence in COPD patients

    PubMed Central

    Darbà, Josep; Ramírez, Gabriela; Sicras, Antoni; Francoli, Pablo; Torvinen, Saku; Sánchez-de la Rosa, Rainel

    2015-01-01

    Objective This study aims to identify factors associated with poor adherence to COPD treatment in patients receiving a fixed-dose combination (FDC) of inhaled corticosteroids and long-acting β2-agonist (ICS/LABA), focusing on the importance of inhaler devices. Methods We conducted a retrospective and multicenter study based on a review of medical registries between 2007 and 2012 of COPD patients (n=1,263) treated with ICS/LABA FDC, whose medical devices were either dry powder inhalers (DPIs) or pressurized metered-dose inhalers (pMDI). Medication adherence included persistence outcomes through 18 months and medication possession ratios. Data on exacerbations, comorbidities, demographic characteristics, and health care resource utilization were also included as confounders of adherence. Results The analyses revealed that COPD patients whose medication was delivered through a DPI were less likely to have medication adherence compared to patients with pMDI, after adjusting for confounding factors, especially active ingredients. Younger groups of patients were less likely to be adherent compared to the oldest group. Smoker men were less likely to be adherent compared to women and non-smokers. Comorbidities decreased the probability of treatment adherence. Those patients that visited their doctor once a month were more likely to adhere to their medication regimen; however, suboptimal adherence was more likely to occur among those patients who visited more than three times per month their doctor. We also found that worsening of COPD is negatively associated with adherence. Conclusion According to this study, inhaler devices influence patients’ adherence to long-term COPD medication. We also found that DPIs delivering ICS/LABA FDC had a negative impact on adherence. Patients’ clinic and socioeconomic characteristics were associated with adherence. PMID:26604733

  3. International Breast Implant Registry: a user report.

    PubMed

    Renner, C; Neuhann-Lorenz, C

    2006-01-01

    The International Breast Implant Registry (IBIR) was founded in 2002 under the auspices of the International Plastic, Reconstructive, and Aesthetic Surgery Foundation (IPRAF), the International Confederation for Plastic, Reconstructive, and Aesthetic Surgery (IPRAS), and the European and International Committee for Quality Assurance, Medical Technologies, and Devices in Plastic (EQUAM) on the basis of continuous discussion about the safety and compatibility of different breast implants. The IBIR aims to integrate and replace the already existing national breast implant registries. It also is assumed that the European Parliament, the Food and Drug Administration, and international organizations of plastic and aesthetic surgeons will postulate obligatory international breast implant registration. Currently, IBIR is in a pilot phase with the goal of understanding data collection issues and concerns in various countries whereby the data entered to date will be completely available in the final version. A well-established global registry represents an important tool of quality assurance. By publishing their experiences in applying the registry, the authors aim to encourage more plastic and aesthetic surgeons to submit their cases to the registry and thus enhance its value as a successful and powerful device.

  4. Morbidly adherent placenta.

    PubMed

    Abuhamad, Alfred

    2013-10-01

    Morbidly adherent placenta, which describes placenta accreta, increta, and percreta, implies an abnormal implantation of the placenta into the uterine wall. The incidence of placenta accreta has increased significantly over the past several decades, with the main risk factors include prior cesarean section and placental previa. Sonographic markers of placenta accreta can be present as early as the first trimester and include a low uterine implantation of a gestational sac, multiple vascular lacunae within the placenta, loss of the normal hypoechoic retroplacental zone, and abnormality of the uterine serosa-bladder interface, among others. Ultrasound has high sensitivity and specificity for the diagnosis of placenta accreta and MRI should be reserved for rare cases in which the ultrasound is non-diagnostic. The optimum time for planned delivery for a patient with placenta accreta is around 34-35 weeks following a course of corticosteroid injection. The successful management of placenta accreta includes a multidisciplinary care team approach with the successful management relying heavily on the prenatal diagnosis of this entity and preparing for the surgical management in a multidisciplinary approach by assuring the most skilled team is available for those patients.

  5. 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

  6. Reinforcing adherence to antihypertensive medications.

    PubMed

    Petry, Nancy M; Alessi, Sheila M; Byrne, Shannon; White, William B

    2015-01-01

    This pilot study evaluated a reinforcement intervention to improve adherence to antihypertensive therapy. Twenty-nine participants were randomized to standard care or standard care plus financial reinforcement for 12 weeks. Participants in the reinforcement group received a cell phone to self-record videos of adherence, for which they earned rewards. These participants sent videos demonstrating on-time adherence 97.8% of the time. Pill count adherence differed significantly between the groups during treatment, with 98.8%±1.5% of pills taken during treatment in the reinforcement condition vs 92.6%±9.2% in standard care (P<.002). Benefits persisted throughout a 3-month follow-up, with 93.8%±9.3% vs 78.0%±18.5% of pills taken (P<.001). Pill counts correlated significantly (P<.001) with self-reports of adherence, which also differed between groups over time (P<.01). Systolic blood pressure decreased modestly over time in participants overall (P<.01) but without significant time-by-group effects. These results suggest that reinforcing medication adherence via cellular phone technology and financial reinforcement holds potential to improve adherence.

  7. Establishing an institutional therapeutic apheresis registry.

    PubMed

    Mann, Steven A; McCleskey, Brandi; Marques, Marisa B; Adamski, Jill

    2016-12-01

    Apheresis was first performed as a therapeutic procedure in the 1950s. The first national therapeutic apheresis (TA) registry was established in Canada in 1981 and other national registries followed, including two attempts at establishing an international TA registry. There is no national registry in the United States. Our large, academic, tertiary hospital has a very active TA service. We created a TA database to track all procedures performed by the apheresis service by transferring data from paper appointment logs and the electronic medical records into a Microsoft Access database. Retrospective data from each TA procedure performed at UAB from January 1, 2003 through December 31, 2012 were entered, including the type of procedure, indication, date, and patient demographics. Microsoft Excel was used for data analysis. During the 10-year period, our TA service treated 1,060 patients and performed 11,718 procedures. Of these patients, 70% received therapeutic plasma exchange (TPE), 21% received extracorporeal photopheresis (ECP), 4.5% received red cell exchange (RCE), 4.2% received leukocytapheresis, and 0.6% underwent platelet depletion. Among the procedures, 54% were TPEs, 44% were ECPs, 1.3% were RCEs, 0.5% were leukocytaphereses, and 0.1% were platelet depletions. According to the current literature, national and international TA use is underreported. We believe that the UAB TA registry provides useful information about TA practices in our region and can serve as a model for other institutions. Furthermore, data from multiple institutional registries can be used for clinical research to increase the available evidence for the role of TA in various conditions. J. Clin. Apheresis 31:516-522, 2016. © 2015 Wiley Periodicals, Inc.

  8. The Advanced Stages of Stellar Evolution: Impact of Mass Loss, Rotation, and Link With B[e] Stars

    NASA Astrophysics Data System (ADS)

    Georgy, C.; Saio, H.; Ekström, S.; Meynet, G.

    2017-02-01

    In this paper we discuss some consequences of rotation and mass loss on the evolved stages of massive star evolution. The physical reasons of the time evolution of the surface velocity are explained. We also show how the late-time evolution of massive stars are impacted in combination with the effects of mass loss. The most interesting result is that, in some cases, a massive star can have a blue-red-blue evolution, opening the possibility that blue supergiants are composed by two distinct populations of stars: one just leaving the main sequence and crossing the HRD for the first time, and the other one evolving back to the blue side of the HRD after a Red Supergiant phase. We discuss a few possible observational tests that can allow distinguishing these two populations and how supergiant B[e] stars fit in this context.

  9. Probing Gas and Dust around B[e] Stars at the Highest Angular Resolution: A Decade of Interferometric Studies

    NASA Astrophysics Data System (ADS)

    Meilland, A.

    2017-02-01

    Long-baseline interferometry is the one and only technique offering the sub-milliarcsecond resolution needed to spatially resolve the close environment of stars. Since the construction of modern facilities such as the Very Large Telescope Interferometer (VLTI) in Chile, and the Center for High Resolution Array (CHARA) in California, it became a key technique to probe massive stars and their often complex circumstellar environments. The more recent generation of instruments even combines the power of interferometry and spectroscopy allowing to put more constraints on chemical, physical, and dynamical properties of circumstellar gas and dust. Here I briefly present the technique and the current generation of instruments, I review the main results obtained in the last decade on B[e] stars, and, I present the upcoming second generation of instruments at VLTI and the current plan to upgrade CHARA.

  10. [The registry for asbesto-related tumors].

    PubMed

    Melino, C

    2003-01-01

    The author stresses the importance of DPCM 10 December 2002 no.308, which determines the format and the rules to fill the registry for the cases of asbestos-related mesothelioma, according to art 36, comma 3, DLgs 277/91. The Author admits the usefulness of such a registry, but comments that its official approval came very late, because it actually was started in 1993 by ISPESL (The Higher Institute for Prevention and Safety of Labor), after the approval of DLgs 277/91. According to ISPESL initiative, all cases of mesothelioma and related circumstances were (and are) collected through a periferal information net operated by COR's.

  11. University of Washington Twin Registry: Construction and characteristics of a community-based twin registry

    PubMed Central

    Afari, Niloofar; Noonan, Carolyn; Goldberg, Jack; Edwards, Karen; Gadepalli, Kiran; Osterman, Bethany; Evanoff, Cynthia; Buchwald, Dedra

    2010-01-01

    The University of Washington Twin Registry is a community-based registry of twins identified from the Washington State Department of Licensing. A fortuitous quirk in the Washington State drivers' license and identification number assignment, and collaborative Washington State laws, permitted us to build a statewide registry. Since obtaining approval from the Washington State Attorney General, the Washington State Department of Licensing has provided us with information on over 26,000 newly licensed twins, and we continue to receive computerized records on approximately 80 new twins per week. The University of Washington Twin Registry is assembled by mailing each twin a recruitment packet that includes an information sheet, brochure, brief survey, and nominal gift. Once both members of a twin pair have completed the packet, the pair is enrolled in the Registry. As of June 2006, 2,287 adult twin pairs have enrolled in the Registry; about one half of these are female-female pairs. Among all twins, the average age is 32 years. Based on self-report, 52% of twins are MZ, 42% are DZ, and zygosity on 6% cannot yet be determined. We also have established a clinical protocol for collecting additional data and DNA from all twins participating in research studies requiring an in-person visit. The Registry has established policies and procedures to protect the confidentiality of twin data and guidelines for the use of the Registry by investigators. Plans for the further growth of the University of Washington Twin Registry and its use are discussed. PMID:17254446

  12. National Marrow Donor Program and Be The Match Registry

    MedlinePlus

    ... National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating ... Donor Program (NMDP) and its Be The Match Registry are nonprofit organizations dedicated to creating an opportunity ...

  13. 76 FR 38619 - Proposed Information Collection; Comment Request; National Saltwater Angler Registry and State...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-07-01

    ... Saltwater Angler Registry and State Exemption Program AGENCY: National Oceanic and Atmospheric... currently approved collection. The National Saltwater Angler Registry Program (Registry Program) was... fisheries surveys, including establishing a national saltwater angler and for-hire vessel registry,...

  14. Medication Adherence Measures: An Overview.

    PubMed

    Lam, Wai Yin; Fresco, Paula

    2015-01-01

    WHO reported that adherence among patients with chronic diseases averages only 50% in developed countries. This is recognized as a significant public health issue, since medication nonadherence leads to poor health outcomes and increased healthcare costs. Improving medication adherence is, therefore, crucial and revealed on many studies, suggesting interventions can improve medication adherence. One significant aspect of the strategies to improve medication adherence is to understand its magnitude. However, there is a lack of general guidance for researchers and healthcare professionals to choose the appropriate tools that can explore the extent of medication adherence and the reasons behind this problem in order to orchestrate subsequent interventions. This paper reviews both subjective and objective medication adherence measures, including direct measures, those involving secondary database analysis, electronic medication packaging (EMP) devices, pill count, and clinician assessments and self-report. Subjective measures generally provide explanations for patient's nonadherence whereas objective measures contribute to a more precise record of patient's medication-taking behavior. While choosing a suitable approach, researchers and healthcare professionals should balance the reliability and practicality, especially cost effectiveness, for their purpose. Meanwhile, because a perfect measure does not exist, a multimeasure approach seems to be the best solution currently.

  15. Medication Adherence Measures: An Overview

    PubMed Central

    Lam, Wai Yin; Fresco, Paula

    2015-01-01

    WHO reported that adherence among patients with chronic diseases averages only 50% in developed countries. This is recognized as a significant public health issue, since medication nonadherence leads to poor health outcomes and increased healthcare costs. Improving medication adherence is, therefore, crucial and revealed on many studies, suggesting interventions can improve medication adherence. One significant aspect of the strategies to improve medication adherence is to understand its magnitude. However, there is a lack of general guidance for researchers and healthcare professionals to choose the appropriate tools that can explore the extent of medication adherence and the reasons behind this problem in order to orchestrate subsequent interventions. This paper reviews both subjective and objective medication adherence measures, including direct measures, those involving secondary database analysis, electronic medication packaging (EMP) devices, pill count, and clinician assessments and self-report. Subjective measures generally provide explanations for patient's nonadherence whereas objective measures contribute to a more precise record of patient's medication-taking behavior. While choosing a suitable approach, researchers and healthcare professionals should balance the reliability and practicality, especially cost effectiveness, for their purpose. Meanwhile, because a perfect measure does not exist, a multimeasure approach seems to be the best solution currently. PMID:26539470

  16. Hip fracture registries: utility, description, and comparison.

    PubMed

    Sáez-López, P; Brañas, F; Sánchez-Hernández, N; Alonso-García, N; González-Montalvo, J I

    2017-04-01

    Hip fractures (HF) are prevalent and involve high morbidity and mortality so improving their management is important. HF registries are a good way to improve knowledge about this condition and its quality of care, while at the same time reducing clinical variability, optimizing efficiency, improving outcomes, and reducing costs.

  17. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at www... website. (b) Individuals must submit their name; address; telephone number; date of birth; region(s) of... vessel owner or operator must submit vessel owner name, address, date of birth, and telephone...

  18. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2011-06-01

    Investigator Parkinsonism (PS) is a syndrome characterized by tremor , rigidity, slowness of movement, and problems with walking and balance...2. Developing an identification protocol. The primary source of parkinsonism cases will be the Indian Health Service (IHS) provider database, called...of parkinsonism among Alaska Natives. Status: Complete 3. Developing a secure Alaska Native parkinsonism registry database. Status: The database

  19. 46 CFR 67.17 - Registry endorsement.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 46 Shipping 2 2014-10-01 2014-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) DOCUMENTATION AND MEASUREMENT OF VESSELS..., American Samoa, Wake, Midway, or Kingman Reef; and any other employment for which a coastwise, or...

  20. 46 CFR 67.17 - Registry endorsement.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 46 Shipping 2 2012-10-01 2012-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) DOCUMENTATION AND MEASUREMENT OF VESSELS..., American Samoa, Wake, Midway, or Kingman Reef; and any other employment for which a coastwise, or...

  1. 46 CFR 67.17 - Registry endorsement.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 46 Shipping 2 2013-10-01 2013-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) DOCUMENTATION AND MEASUREMENT OF VESSELS..., American Samoa, Wake, Midway, or Kingman Reef; and any other employment for which a coastwise, or...

  2. 46 CFR 67.17 - Registry endorsement.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 46 Shipping 2 2011-10-01 2011-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) DOCUMENTATION AND MEASUREMENT OF VESSELS..., American Samoa, Wake, Midway, or Kingman Reef; and any other employment for which a coastwise, or...

  3. 46 CFR 67.17 - Registry endorsement.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 46 Shipping 2 2010-10-01 2010-10-01 false Registry endorsement. 67.17 Section 67.17 Shipping COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) DOCUMENTATION AND MEASUREMENT OF VESSELS..., American Samoa, Wake, Midway, or Kingman Reef; and any other employment for which a coastwise, or...

  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. 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...

  6. 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...

  7. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 5 2013-10-01 2013-10-01 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...

  8. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 5 2012-10-01 2012-10-01 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...

  9. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 5 2014-10-01 2014-10-01 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...

  10. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

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

  11. 48 CFR 4.1104 - Disaster Response Registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 48 Federal Acquisition Regulations System 1 2013-10-01 2013-10-01 false Disaster Response Registry... ADMINISTRATIVE MATTERS System for Award Management 4.1104 Disaster Response Registry. Contracting officers shall consult the Disaster Response Registry via https://www.acquisition.gov when contracting for debris...

  12. 76 FR 4092 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-01-24

    ... National Oceanic and Atmospheric Administration RIN 0648-XA131 National Saltwater Angler Registry Program... INFORMATION: The final rule implementing the National Saltwater Angler Registry Program, 50 CFR part 600... registered under a qualifying State license and/or registry program, or to provide catch and effort data...

  13. 48 CFR 4.1104 - Disaster Response Registry.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 48 Federal Acquisition Regulations System 1 2011-10-01 2011-10-01 false Disaster Response Registry... ADMINISTRATIVE MATTERS Central Contractor Registration 4.1104 Disaster Response Registry. Contracting officers shall consult the Disaster Response Registry at www.ccr.gov when contracting for debris...

  14. 27 CFR 22.66 - Registry of stills.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills. 22.66... OF THE TREASURY ALCOHOL DISTRIBUTION AND USE OF TAX-FREE ALCOHOL Qualification Registry of Stills § 22.66 Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable...

  15. 27 CFR 20.66 - Registry of stills.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills. 20.66 Section 20.66 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... and Users Registry of Stills § 20.66 Registry of stills. The provisions of subpart C of part 29...

  16. 27 CFR 20.66 - Registry of stills.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry of stills. 20.66 Section 20.66 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... and Users Registry of Stills § 20.66 Registry of stills. The provisions of subpart C of part 29...

  17. 48 CFR 4.1104 - Disaster Response Registry.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 48 Federal Acquisition Regulations System 1 2012-10-01 2012-10-01 false Disaster Response Registry... ADMINISTRATIVE MATTERS Central Contractor Registration 4.1104 Disaster Response Registry. Contracting officers shall consult the Disaster Response Registry via https://www.acquisition.gov when contracting for...

  18. 48 CFR 4.1104 - Disaster Response Registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 48 Federal Acquisition Regulations System 1 2010-10-01 2010-10-01 false Disaster Response Registry... ADMINISTRATIVE MATTERS Central Contractor Registration 4.1104 Disaster Response Registry. Contracting officers shall consult the Disaster Response Registry at www.ccr.gov when contracting for debris...

  19. 78 FR 49478 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-14

    ... National Oceanic and Atmospheric Administration RIN 0648-XC403 National Saltwater Angler Registry Program... Angler Registry Program. DATES: The registration fee will be required effective August 1, 2013. ADDRESSES... final rule implementing the National Saltwater Angler Registry Program, 50 CFR part 600, subpart P,...

  20. 76 FR 22082 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-04-20

    ... National Oceanic and Atmospheric Administration RIN 0648-XA368 National Saltwater Angler Registry Program... INFORMATION: The final rule implementing the National Saltwater Angler Registry Program, 50 CFR part 600... registered under a qualifying state license and/or registry program, or to provide catch and effort data...

  1. 27 CFR 22.66 - Registry of stills.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills. 22.66... OF THE TREASURY LIQUORS DISTRIBUTION AND USE OF TAX-FREE ALCOHOL Qualification Registry of Stills § 22.66 Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable...

  2. 27 CFR 20.66 - Registry of stills.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry of stills. 20.66 Section 20.66 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... and Users Registry of Stills § 20.66 Registry of stills. The provisions of subpart C of part 29...

  3. 27 CFR 22.66 - Registry of stills.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry of stills. 22.66... OF THE TREASURY LIQUORS DISTRIBUTION AND USE OF TAX-FREE ALCOHOL Qualification Registry of Stills § 22.66 Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable...

  4. 48 CFR 4.1104 - Disaster Response Registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 48 Federal Acquisition Regulations System 1 2014-10-01 2014-10-01 false Disaster Response Registry... ADMINISTRATIVE MATTERS System for Award Management 4.1104 Disaster Response Registry. Contracting officers shall consult the Disaster Response Registry via https://www.acquisition.gov when contracting for debris...

  5. 27 CFR 22.66 - Registry of stills.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills. 22.66... OF THE TREASURY ALCOHOL DISTRIBUTION AND USE OF TAX-FREE ALCOHOL Qualification Registry of Stills § 22.66 Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable...

  6. 27 CFR 20.66 - Registry of stills.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills. 20.66 Section 20.66 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... and Users Registry of Stills § 20.66 Registry of stills. The provisions of subpart C of part 29...

  7. 27 CFR 20.66 - Registry of stills.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills. 20.66 Section 20.66 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... and Users Registry of Stills § 20.66 Registry of stills. The provisions of subpart C of part 29...

  8. 27 CFR 22.66 - Registry of stills.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry of stills. 22.66... OF THE TREASURY LIQUORS DISTRIBUTION AND USE OF TAX-FREE ALCOHOL Qualification Registry of Stills § 22.66 Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable...

  9. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 19 Customs Duties 1 2013-04-01 2013-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  10. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 19 Customs Duties 1 2011-04-01 2011-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  11. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 19 Customs Duties 1 2010-04-01 2010-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  12. 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...

  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...

  14. 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...

  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...

  16. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 19 Customs Duties 1 2012-04-01 2012-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  17. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 19 Customs Duties 1 2014-04-01 2014-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

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

    PubMed

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

    2015-04-01

    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.

  19. Using a registry to improve immunization delivery.

    PubMed

    Kairys, Steven W; Gubernick, Ruth S; Millican, Adrienne; Adams, William G

    2006-07-01

    The NJIPSP was successful in encouraging a group of small urban practices to adopt the use of immunization registry and to transform immunization delivery from a mechanistic well-child service to a visible, monitored process of care. The project represents a unique combination of technology, public-private collaboration, and well-established quality improvement techniques. The change process involved the whole office as a team in adopting new immunization delivery roles and services. The greatest barrier to acceptance of the registry was (and continues to be) the need for manual data entry as the primary source of data collection, rather than electronic data transfer from other systems. The manual entry of data was labor intensive for participating practices and affected data measurement. Despite this barrier, however, the majority of practices substantially improved the quality of their immunization delivery practices in multiple areas. The rapid movement of primary care practices toward some form of electronic record may reduce this barrier and increase the percentage of practices willing to use a community registry. Practices that engaged collectively in the change process gained momentum from the group effort. Equally important was the public health partnership that helped identify and reduce improvement obstacles. Sustainability of practice-based immunization changes will rely, in part, on the registry's ease of use and the continued visibility of public health at the practice level. Active practice level collaboration by public health adds great value to change efforts. We believe that the best possible immunization delivery relies on both technology (registries and the EMR) and effective office systems. Projects like the NJIPSP are models for systems that integrate technology, practice change, and quality improvement, and their success has the potential to foster the spread of this approach to other primary care practices (especially in New Jersey). The

  20. [Legislation of cancer registries in Japan- an outline of the national cancer registry].

    PubMed

    Nishino, Yoshikazu

    2015-04-01

    The national cancer registry in Japan will commence operations in January 2016 under the Cancer Registry Promotion Act, which was established in December 2013. Although data on cancer incidence and survival rates in Japan have been available for limited regions for a long time, accurate nationwide data obtained from the national cancer registry database will contribute to the planning and evaluation of cancer control in Japan. It is expected that this database will be utilized in evaluating the quality of medical care for cancer patients, in assessing the accuracy of cancer screening, and in follow-up surveys in nationwide cohort studies. Furthermore, under the Cancer Registry Promotion Act, hospitals will be permitted to obtain vital patient information from data registered in the national cancer registry database, which will promote the publication of survival rates for cancer patients and accelerate research at hospitals. The founding of the Japanese national cancer registry is a landmark development in the promotion of cancer control and cancer research in Japan and it is essential that the Japanese population benefits from the information obtained from this database.

  1. Clinical trial registries: more international, converging efforts are needed.

    PubMed

    Pansieri, Claudia; Pandolfini, Chiara; Bonati, Maurizio

    2017-02-27

    Clinical trial registries are being increasingly acknowledged worldwide. We searched for possibly trustworthy online registries that are not already included in the International Clinical Trials Registry Platform to evaluate whether other useful trial data sources exist and whether they could potentially be consulted, since the strategy search within this platform has recently been questioned. Fifty-nine registries were initially identified, and 11 of them fit the criteria applied and were analyzed for quality and usability. Four additional, potentially reliable registries were identified that researchers could exploit in order to obtain a more global view of the issue being investigated.

  2. The challenge of patient adherence

    PubMed Central

    Martin, Leslie R; Williams, Summer L; Haskard, Kelly B; DiMatteo, M Robin

    2005-01-01

    Quality healthcare outcomes depend upon patients' adherence to recommended treatment regimens. Patient nonadherence can be a pervasive threat to health and wellbeing and carry an appreciable economic burden as well. In some disease conditions, more than 40% of patients sustain significant risks by misunderstanding, forgetting, or ignoring healthcare advice. While no single intervention strategy can improve the adherence of all patients, decades of research studies agree that successful attempts to improve patient adherence depend upon a set of key factors. These include realistic assessment of patients' knowledge and understanding of the regimen, clear and effective communication between health professionals and their patients, and the nurturance of trust in the therapeutic relationship. Patients must be given the opportunity to tell the story of their unique illness experiences. Knowing the patient as a person allows the health professional to understand elements that are crucial to the patient's adherence: beliefs, attitudes, subjective norms, cultural context, social supports, and emotional health challenges, particularly depression. Physician–patient partnerships are essential when choosing amongst various therapeutic options to maximize adherence. Mutual collaboration fosters greater patient satisfaction, reduces the risks of nonadherence, and improves patients' healthcare outcomes. PMID:18360559

  3. 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.

  4. Policies and procedures for establishing a national registry of persons exposed to hazardous substances (National Exposure Registry)

    SciTech Connect

    Not Available

    1988-01-01

    In the document, the Agency for Toxic Substances and Disease Registry (ATSDR) procedures for meeting the statutory mandate for a registry of persons exposed to hazardous substances are described. The rationale for and purpose of the Exposure Registry is to address health issues at hazardous waste sites and emergency chemical spills. The registry activity specifically addresses long-term health issues related to the exposures of hazardous substances and/or mixtures of hazardous substances. The creation of the registry is meant to provide--through the creation of large, valid data files--information needed by researchers to elucidate the presence or absence of the long-term health effects.

  5. Kepler Flares. IV. A Comprehensive Analysis of the Activity of the dM4e Star GJ 1243

    NASA Astrophysics Data System (ADS)

    Silverberg, Steven M.; Kowalski, Adam F.; Davenport, James R. A.; Wisniewski, John P.; Hawley, Suzanne L.; Hilton, Eric J.

    2016-10-01

    We present a comprehensive study of the active dM4e star GJ 1243. We use previous observations and ground-based echelle spectroscopy to determine that GJ 1243 is a member of the Argus association of field stars, suggesting it is ∼ 30{--}50 {{Myr}} old. We analyze 11 months of 1 minute cadence data from Kepler, presenting Kepler flare frequency distributions, as well as determining correlations between flare energy, amplitude, duration, and decay time. We find that the exponent α of the power-law flare energy distribution varies in time, primarily due to completeness of sample and the low frequency of high-energy flares. We also find a deviation from a single power law at high energy. We use ground-based spectroscopic observations that were simultaneous with the Kepler data to provide simultaneous photometric and spectroscopic analysis of three low-energy flares, the lowest-energy dMe flares with detailed spectral analysis to date on any star. The spectroscopic data from these flares extend constraints for radiative hydrodynamic flare models to a lower energy regime than has previously been studied. We use this simultaneous spectroscopy and Kepler photometry to develop approximate conversions from the Kepler bandpass to the traditional U and B bands. This conversion will be a critical factor in comparing any Kepler flare analyses to the canon of previous ground-based flare studies.

  6. An electronic registry for physiotherapists in Belgium.

    PubMed

    Buyl, Ronald; Nyssen, Marc

    2008-01-01

    This paper describes the results of the KINELECTRICS project. Since more and more clinical documents are stored and transmitted in an electronic way, the aim of this project was to design an electronic version of the registry that contains all acts of physiotherapists. The solution we present here, 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. The proposed structure, using XML technology can also form a basis for the development of tools that can be used by the controlling authorities. By means of a certification procedure for 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.

  7. METADATA REGISTRY, ISO/IEC 11179

    SciTech Connect

    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 schemes 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.

  8. EPA Facility Registry Service (FRS): RADINFO

    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 Radiation Information Database (RADINFO). RADINFO contains information about facilities that are regulated by EPA for radiation and radioactivity. 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. This data set contains the subset of FRS integrated facilities that link to RADINFO facilities once the RADINFO data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  9. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2010-11-01

    1-0001 Brian A Trimble, MD Alaska Native Parkinson’s Disease Registry Principal Investigator A. Introduction Parkinsonism (PS) is a syndrome...characterized by tremor , rigidity, slowness of movement, and problems with walking and balance. Parkinson’s disease is the most common form of PS... parkinsonism cases will be the Indian Health Service (IHS) provider database, called the Resource and Patient Management System (RPMS), but the protocol will

  10. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2009-11-01

    W81XWH-07-1-0001 Brian A Trimble, MD Alaska Native Parkinson’s Disease Registry Principal Investigator A. Introduction Parkinsonism (PS) is a...syndrome characterized by tremor , rigidity, slowness of movement, and problems with walking and balance. Parkinson’s disease is the most common form...protocol. The primary source of parkinsonism cases will be the Indian Health Service (IHS) provider database, called the Resource and Patient Management

  11. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2012-07-01

    Investigator 4 A. Introduction Parkinsonism (PS) is a syndrome characterized by tremor , rigidity, slowness of movement, and problems with walking...2011. The aims of this project are: Specific Aim 1: Identify cases of parkinsonism among Alaska Native people and populate a secure electronic...registry database. Specific Aim 2: Provide education on parkinsonism and its treatment to primary care physicians and other health care providers

  12. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2007-11-01

    Questionable 0 DK f. seborrheic dermatitis 0 Yes 0 No 0 Questionable 0 DK Exclusion criteria O Prominent postural instability in the first 3...4 A. Introduction Parkinsonism (PS) is a syndrome characterized by tremor, rigidity, slowness of movement, and problems with walking and balance...the Alaska Native Medical Center. B. Body The intent of this proposal is to establish a registry of parkinsonism cases among Alaska native

  13. Alaska Native Parkinson’s Disease Registry

    DTIC Science & Technology

    2013-07-01

    07-1-0001 TITLE: Alaska Native Parkinson’s Disease Registry PRINCIPAL INVESTIGATOR: Caroline M. Tanner, M.D...The views, opinions and/or findings contained in this report are those of the author( s ) and should not be construed as an official Department...GRANT NUMBER 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR( S ) 5d. PROJECT NUMBER 5e. TASK NUMBER E-Mail: 5f. WORK UNIT NUMBER 7. PERFORMING

  14. Malaysian Psoriasis Registry--preliminary report of a pilot study using a newly revised registry form.

    PubMed

    Chang, C C; Gangaram, H B; Hussein, S H

    2008-09-01

    The Malaysian Psoriasis Registry, established in 1998, is the first skin disease clinical registry in Malaysia. It aims to provide useful data on various aspects of psoriasis. Following an extensive revision of the registry form in 2007, a total of 509 psoriasis patients from 10 government dermatologic centres were reviewed in a three month pilot study. The onset of psoriasis was during the second to fourth decade of life in the majority of patients. There was no sexual and ethnic predilection. A positive family history was present in 21.2%, and more common in patients with younger disease onset. The main aggravating factors of psoriasis were stress, sunlight and infection. Plaque psoriasis was the commonest clinical type (80.9%). Joint disease was present in 17.3% of patients, among which mono-/oligoarticular type being the commonest. Nail changes occurred in 68%. More psoriasis patients were overweight and obese compared to the normal population. The mean Dermatologic Life Quality Index (DLQI) score was 8.08 +/- 6.29, and changes during subsequent follow-up may reflect therapeutic effectiveness. This study enabled evaluation of the revised registry form and helped in identifying shortcomings in the implementation of the registry.

  15. International Quotidian Dialysis Registry: Annual report 2010.

    PubMed

    Lindsay, Robert M; Suri, Rita S; Moist, Louise M; Garg, Amit X; Cuerden, Meaghan; Langford, Sarah; Hakim, Raymond; Ofsthun, Norma J; McDonald, Stephen P; Hawley, Carmel; Caskey, Ferqus J; Couchoud, Cecile; Awaraji, Christian; Nesrallah, Gihad E

    2011-01-01

    The International Quotidian Dialysis Registry (IQDR) is a global initiative designed to study practices and outcomes associated with the use of hemodialysis (HD) regimens of increased frequency and/or duration. The IQDR grew out of the initiative that lead to the randomized prospective studies of nocturnal HD and short hours daily dialysis vs. conventional thrice weekly HD that are conducted by the Frequent Hemodialysis Network sponsored by the National Institutes of Health. These 2 separate studies are drawing to a close and the first results are expected to be reported later this year. These studies use surrogate outcomes for their primary endpoints as they are not powered to look at outcomes of mortality and hospitalization. The IQDR attempts to aggregate long-term follow-up data from centers utilizing alternative HD regimens worldwide and will have adequate statistical power to examine those important outcomes. To date, the IQDR has enrolled patients from Canada, the United States, Australia, New Zealand, and France and has linked with commercial databases and national registries. This sixth annual report of the IQDR describes: (1) An update on the governance structure; (2) The recommendations made at the first general meetings of the IQDR Scientific Committee and Advisory Board; (3) The status of those recommendations; (4) A summary of current data sources and participating registries; (5) The status of recruitment to date; (6) The creation of a specific Canadian IQDR data set and; (7) The current research agenda.

  16. Changing roles of population-based cancer registries in Australia.

    PubMed

    Roder, David; Creighton, Nicola; Baker, Deborah; Walton, Richard; Aranda, Sanchia; Currow, David

    2015-09-01

    Registries have key roles in cancer incidence, mortality and survival monitoring and in showing disparities across the population. Incidence monitoring began in New South Wales in 1972 and other jurisdictions soon followed. Registry data are used to evaluate outcomes of preventive, screening, treatment and support services. They have shown decreases in cancer incidence following interventions and have been used for workforce and other infrastructure planning. Crude markers of optimal radiotherapy and chemotherapy exist and registry data are used to show shortfalls against these markers. The data are also used to investigate cancer clusters and environmental concerns. Survival data are used to assess service performance and interval cancer data are used in screening accreditation. Registries enable determination of risk of multiple primary cancers. Clinical quality registries are used for clinical quality improvement. Population-based cancer registries and linked administrative data complement clinical registries by providing high-level system-wide data. The USA Commission on Cancer has long used registries for quality assurance and service accreditation. Increasingly population-based registry data in Australia are linked with administrative data on service delivery to assess system performance. Addition oftumour stage and otherprognostic indicators is important forthese analyses and is facilitated by the roll-out of structured pathology reporting. Data linkage with administrative data, following checks on the quality of these data, enables assessment of patterns of care and other performance indicators for health-system monitoring. Australian cancer registries have evolved and increasingly are contributing to broader information networks for health system management.

  17. A Registry Framework Enabling Patient-Centred Care.

    PubMed

    Bellgard, Matthew I; Napier, Kathryn; Render, Lee; Radochonski, Maciej; Lamont, Leanne; Graham, Caroline; Wilton, Steve D; Fletcher, Sue; Goldblatt, Jack; Hunter, Adam A; Weeramanthri, Tarun

    2015-01-01

    Clinical decisions rely on expert knowledge that draws on quality patient phenotypic and physiological data. In this regard, systems that can support patient-centric care are essential. Patient registries are a key component of patient-centre care and can come in many forms such as disease-specific, recruitment, clinical, contact, post market and surveillance. There are, however, a number of significant challenges to overcome in order to maximise the utility of these information management systems to facilitate improved patient-centred care. Registries need to be harmonised regionally, nationally and internationally. However, the majority are implemented as standalone systems without consideration for data standards or system interoperability. Hence the task of harmonisation can become daunting. Fortunately, there are strategies to address this. In this paper, a disease registry framework is outlined that enables efficient deployment of national and international registries that can be modified dynamically as registry requirements evolve. This framework provides a basis for the development and implementation of data standards and enables patients to seamlessly belong to multiple registries. Other significant advances include the ability for registry curators to create and manage registries themselves without the need to contract software developers, and the concept of a registry description language for ease of registry template sharing.

  18. Current Concepts for PrEP Adherence

    PubMed Central

    Haberer, Jessica E.

    2016-01-01

    Purpose of review This review describes 1) the current understanding of adherence to oral PrEP, 2) methods for adherence measurement, 3) approaches to supporting PrEP adherence, and 4) guidance for defining PrEP adherence goals within the larger context of HIV prevention. Recent findings PrEP adherence has generally been higher in recent trials, open-label extensions, and demonstration projects compared to the initial clinical trials; potential explanations include known PrEP efficacy and different motivations to take PrEP. Recent studies have explored adherence monitoring through electronic pill containers, short message service (SMS), and drug concentrations in hair and dried blood spots. The few PrEP adherence interventions developed to date include combinations of enhanced counseling, feedback of objective adherence measurement, and SMS. Conceptualization of PrEP adherence is evolving. The goal is not 100% adherence indefinitely, as it was in clinical trials. PrEP adherence should be defined with respect to HIV exposure, which varies over time by sexual behavior and use of other prevention strategies. Summary PrEP adherence beyond clinical trials has generally been high enough to achieve reliable HIV prevention. Future efforts to measure and support PrEP adherence should focus on the context of risk for HIV acquisition, accounting for dynamic behaviors and choices among HIV prevention options. PMID:26633638

  19. Recent trends in population-based cancer registries in Japan: the Act on Promotion of Cancer Registries and drastic changes in the historical registry.

    PubMed

    Matsuda, Tomohiro; Sobue, Tomotaka

    2015-02-01

    Cancer registration in Japan has a long history spanning over 60 years; the first population-based cancer registry was established in Miyagi prefecture in 1951. The progress made in the regional population-based cancer registries in terms of standardization and quality improvement during the 10 years of the third comprehensive strategy for cancer control was highlighted in the history of cancer registration in Japan. However, there were still weak points regarding local government-oriented cancer registries that remained, e.g., the reporting of cancer cases to the population-based cancer registries was not a mandatory task for medical institutions. After the Cancer Control Act in 2006, the Act on Promotion of Cancer Registries was finally enacted in Japan on December 6, 2013. According to that Act, hospital managers must report information on any primary cancer that was first diagnosed in their institutions from January 1, 2016 to the prefectural governors. Given the increasing number of cases and amount of information recorded, it would have been almost impossible to maintain our cancer registries using the same system, and changes were required to obtain reliable cancer statistics. This was particularly important in Japan, because the country is facing a hyper-aging society, with two to three million cancer patients requiring entry of detailed information. We appreciate the long history of the Japanese cancer registry, but it is necessary to make dramatic changes to bring the registry up to date and to be able to track the increasing amount of information.

  20. Registries as Tools for Clinical Excellence and the Development of the Pelvic Floor Disorders Registry.

    PubMed

    Weber LeBrun, Emily E

    2016-03-01

    Surgical device innovation has been less regulated than drug development, allowing integration of unproven techniques and materials into standard practice. Successful device registries gather information on patient outcomes and can provide postmarket surveillance of new technologies and allow comparison with currently established treatments or devices. The Pelvic Floor Disorders Registry was developed in collaboration with the Food and Drug Administration, device manufacturers, and other stakeholders to serve as a platform for industry-sponsored postmarket device surveillance, investigator-initiated research, and quality and effectiveness benchmarking, all designed to improve the care of women with pelvic floor disorders.

  1. Packaging interventions to increase medication adherence: systematic review and meta-analysis

    PubMed Central

    Conn, Vicki S.; Ruppar, Todd M.; Chan, Keith C.; Dunbar-Jacob, Jacqueline; Pepper, Ginette A.; De Geest, Sabina

    2015-01-01

    Objective Inadequate medication adherence is a widespread problem that contributes to increase chronic disease complications and health care expenditures. Packaging interventions using pill boxes and blister packs have been widely recommended to address the medication adherence issue. This meta-analysis review determined the overall effect of packaging interventions on medication adherence and health outcomes. In addition, we tested whether effects vary depending on intervention, sample, and design characteristics. Research design and methods Extensive literature search strategies included examination of 13 computerized databases and 19 research registries, hand searches of 57 journal, and author and ancestry searches. Eligible studies included either pill-boxes or blister packaging interventions to increase medication adherence. Primary study characteristics and outcomes were reliably coded. Random-effects analyses were used to calculate overall effect sizes and conduct moderator analyses. Results Data were synthesized across 22,858 subjects from 52 reports. The overall mean weighted standardized difference effect size for two-group comparisons was 0.593 (favoring treatment over control), which is consistent with the mean of 71% adherence for treatment subjects compared to 63% among control subjects. We found using moderator analyses that interventions were most effective when they used blister packs and were delivered in pharmacies, while interventions were less effective when studies included older subjects and those with cognitive impairment. Methodological moderator analyses revealed significantly larger effect sizes in studies reporting continuous data outcomes instead of dichotomous results and in studies using pharmacy refill medication adherence measures as compared to studies with self-report measures. Conclusions Overall, meta-analysis findings support the use of packaging interventions to effectively increase medication adherence. Limitations of the

  2. Palivizumab prophylaxis of respiratory syncytial virus disease in 2000-2001: results from The Palivizumab Outcomes Registry.

    PubMed

    Parnes, Curt; Guillermin, Judith; Habersang, Rolf; Nicholes, Peggy; Chawla, Vijay; Kelly, Tammy; Fishbein, Judith; McRae, Patty; Goessler, Mary; Gatti, Antoinette; Calcagno, John A; Eki, Cheryl; Harris, Kristen A; Joyave, Joseph; McFarland, Kathy; Protter, Paul; Sullivan, Mary; Stanford, Allan; Lovett, Nancy; Ortiz, Marisol; Rojas, Sharon; Cyrus, Scott; Cyrus, Janell; Cohen, Stuart; Buchin, Debbie; Riordan, Linda; Zuniga, Monica; Shah, Rupa; Minard, Carmen; Quintin, Arden; Douglas, Glenda; van Houten, John; Freutner, Sharyn; Chartrand, Stephen; Nowatzke, Patsy; Romero, Jose; Rhodes, Torunn; Benoit, Michelle; Walter, Emmanuel; Walker, Leslie; DeBonnett, Laurie; Cross, Mia; Free, Teresa; Martin, Sharman; Shank, Karen; Guedes, Ben; Atkinson, Lee Ann; Halpin, George J; Rouse, Kathy; Hand, Ivan; Geiss, Donna; Marshall, James R; Burleson, Lois; Boland, Jim; Seybold, Kelsey; Hunter, Vicki; Unfer, Susan; Schmucker, Jackie; Gley, Margaret; Marcus, Michael; Thompson, Patricia; Milla, Paulino; Young, Connie; Zanni, Robert; Zinno, Virginia; Fetter-Zarzeka, Alexandra; Busey, Amanda; Sokunbi, Modupe A; Airington, Sherrie; Richard, Nancy; Muraligopal, Vellore; Lewis, Stephanie; Weber, F Thomas; Giordano, Beverly P; Linehan, Denise; Roach, Jane; Davis, Randle; Rzepka, Andrew A; Booth, Teri; Smeltzer, David; Walsh, Jeanne; Arispe, Emilio; Rowley, Rhonda; Bolling, Christopher; Botts, Tanya; Haskett, Kateri; Raby, Deana; Batiz, Evelyn; Gelfand, Andrew; Farrell, Lynn; Butler, Stephen; Colby, Linda; Schochet, Peter; Bentler, Julie; Hirsch, David; Wilkinson, Lisa; Aaronson, Allen; Bennett, Eleanora; Wingate, Julie; Quinn, Dawn; Komendowski, Katherine; Deckard, Marcia; Frogel, Michael; Nerwen, Cliff; Copenhaver, Steven; Prater, Michele; Wolsztein, Jacob; Mackey, Kristine; Benbow, Marshall; Naranjo, Marisela; Hensley, Sandra; Hayes, Cindy; Sadeghi, Hossein; Lawson, Sally May; McCall, Mark; Combs, Karla; Ledbetter, Joel; Sarnosky, Karen; Swafford, Cathy; Speer, Michael; Barton, Wendy J; Mink, J W; Lemm, Dianne; Hudak, Mark; Case, Elizabeth; Rowen, Judith; Fuentes, Sandra; Pane, Carly; Richardson, Leslie; Chavarria, Cesar; Cassino, Deanne; Ghaffari, Kourosh; Carroll, Carol; Lee, Haesoon; Guclu, Lydia; Johnson, Christopher; Blum, Valerie; Boron, Marnie L; Sorrentino, Mark; Hirsch, Robert L; Van Veldhuisen, Paul C; Smith, Carol

    2003-06-01

    The objective of the Registry was to characterize the population of infants receiving prophylaxis for respiratory syncytial virus (RSV) disease by describing the patterns and scope of usage of palivizumab in a cross section of US infants. RSV hospitalization outcomes were also described. The Palivizumab (Synagis, MedImmune, Inc., 25 West Watkins Mill Road, Gaithersburg, MD 20878) Outcomes Registry was a prospective multicenter survey conducted at 63 sites. Demographics, injection history, and RSV hospitalization outcomes were collected on 2,116 infants receiving palivizumab. Infants were enrolled in the Registry between September 1, 2000-March 1, 2001, at the time of their first injection. Infants born at less than 32 weeks of gestation accounted for 47% of infants enrolled, and those between 32-35 weeks accounted for 45%; approximately 8% were greater than 35 weeks of gestation. Lower RSV hospitalization rates were observed in infants who had greater adherence to regularly scheduled injections. Nearly one-half of all hospitalizations occurred within the first and second injection intervals, suggesting the importance of early RSV protection. The confirmed RSV hospitalization rate of all infants in the Registry was 2.9%; the rate was 5.8% in infants with chronic lung disease of infancy, and 2.1% in premature infants without chronic lung disease. In conclusion, these data support the continued effectiveness of palivizumab prophylaxis for severe RSV lower respiratory tract disease in a large cohort of high-risk infants from geographically diverse pediatric offices and clinics. The Palivizumab Outcomes Registry provides an opportunity to assess palivizumab utilization and clinical effectiveness in the US.

  3. California Cancer Registry Enhancement for Breast Cancer Research.

    DTIC Science & Technology

    1997-10-01

    AD Grant Number DAMD17-94-J-4508. TITLE: California Cancer Registry Enhancement for Breast Cancer Research PRINCIPAL INVESTIGATOR: William...96 - 30 Sep 97) 4. TITLE AND SUBTITLE California Cancer Registry Enhancement for Breast Cancer Research 6. AUTHOR(S) William Wright, Ph.D. 7...of this project is to enhance the value of the California Cancer Registry as a research tool for clinicians and epidemiologists interested in

  4. Pittsburgh Registry of Infant Multiplets (PRIM): an update.

    PubMed

    Jenkins, Elizabeth A; Maher, Brion S; Marazita, Mary L; Tarter, Ralph E; Ganger, Jennifer B; Watt-Morse, Margaret; Vanyukov, Michael M

    2006-12-01

    This article is an updated review of the Pittsburgh Registry of Infant Multiplets including recruitment methods, data collection, and results of pilot studies conducted in this registry. The main goal of the registry is to study psychological development. The risk for behavior disorders including substance use disorders, as well as language development and dental health are among research targets. Pilot data on the heritability of minor physical anomalies and neuropsychological characteristics (Continuous Performance Test) are reported.

  5. Enhancing Adherence in Clinical Exercise Trials.

    ERIC Educational Resources Information Center

    O'Neal, Heather A.; Blair, Steven N.

    2001-01-01

    Discusses exercise adherence from the perspective of adhering to an exercise treatment in a controlled trial, focusing on: adherence (to intervention and measurement); the development of randomized clinical trials; exemplary randomized clinical trials in exercise science (exercise training studies and physical activity interventions); and study…

  6. Imaging Registries and Single-Center Series.

    PubMed

    Hachamovitch, Rory; Peña, Jessica M; Xie, Joe; Shaw, Leslee J; Min, James K

    2017-03-01

    Randomized controlled trials are often regarded as the pinnacle of research designs, valued for their rigor and internal validity. However, their high costs and selected patient populations limit their applicability, and complementary study designs are needed to guide evidence. In the realm of cardiovascular imaging, research designs using single-center series and registries have contributed key foundational insights into diagnosis, resource use and cost patterns, and prognosis as derived from practical, "real-world" settings. This review highlights the strengths and limitations of these study designs, provides notable examples, and indicates future directions for research.

  7. Cryopreservation of adherent neuronal networks.

    PubMed

    Ma, Wu; O'Shaughnessy, Thomas; Chang, Eddie

    2006-07-31

    Neuronal networks have been widely used for neurophysiology, drug discovery and toxicity testing. An essential prerequisite for future widespread application of neuronal networks is the development of efficient cryopreservation protocols to facilitate their storage and transportation. Here is the first report on cryopreservation of mammalian adherent neuronal networks. Dissociated spinal cord cells were attached to a poly-d-lysine/laminin surface and allowed to form neuronal networks. Adherent neuronal networks were embedded in a thin film of collagen gel and loaded with trehalose prior to transfer to a freezing medium containing DMSO, FBS and culture medium. This was followed by a slow rate of cooling to -80 degrees C for 24 h and then storage for up to 2 months in liquid nitrogen at -196 degrees C. The three components: DMSO, collagen gel entrapment and trehalose loading combined provided the highest post-thaw viability, relative to individual or two component protocols. The post-thaw cells with this protocol demonstrated similar neuronal and astrocytic markers and morphological structure as those detected in unfrozen cells. Fluorescent dye FM1-43 staining revealed active recycling of synaptic vesicles upon depolarizing stimulation in the post-thaw neuronal networks. These results suggest that a combination of DMSO, collagen gel entrapment and trehalose loading can significantly improve conventional slow-cooling methods in cryopreservation of adherent neuronal networks.

  8. [A registry of registries and cohorts: recommendations for metadata and policies].

    PubMed

    Stausberg, J; Semler, S; Neugebauer, E A M

    2014-12-01

    Registries and cohort studies play a central role in patient-oriented medical research, in particular in health services research. In order to increase the transparency about ongoing registries and cohort studies in Germany, and to promote communication and cooperation between the drivers in the field a so-called register portal should be established. Metadata are characteristics that are used to describe registries and cohort studies in the register portal. A limited set of characteristics, the core set, should correctly describe the projects on the one hand while reducing workload for data capture and data administration on the other hand. The core set consists of 26 data elements that had been defined in a Delphi-consensus process involving experts from the working group registries of the German Network for Health Services Research (DNVF) and the working group IT infrastructure and quality management of the Technology, Methods, and Infrastructure for Networked Medical Research (TMF). Transparent policies are required to guarantee traceability and reliability of the portal's services. Six so-called top-level-tasks and 37 use cases were defined in an interim report so far. The metadata have been agreed upon by most of the member associations of the DNVF. Metadata and rules of procedures are the starting point for the practical implementation of the register portal in the next future.

  9. Towards a European registry of severe allergic reactions: current status of national registries and future needs.

    PubMed

    Worm, M; Timmermans, F; Moneret-Vautrin, A; Muraro, A; Malmheden Yman, I I; Lövik, M; Hattersley, S; Crevel, R

    2010-06-01

    The incidence of severe allergic reactions is largely unknown and information about triggering allergens, aggravating factors, demography of patients and medical care is lacking. A European wide registry could provide a powerful tool to improve the management of severe allergic reactions from both a medical and a public health perspective. Analysis of existing registries regarding the type and quality of data being collected was used to develop a plan for a pan-European registry, including the type of system to be used and the range of data to be entered. Surveillance will provide evidence for the efficacy of risk management measures and may identify the emergence of new allergenic foods, and aid monitoring of novel foods, ingredients and technologies. Patients need a clear indication of factors that may increase their risk of having an adverse reaction, which such a registry can help compile. Based on the collected data, food businesses will be able to develop educational programmes for allergen risk assessment and allergen risk communication. Finally, and most importantly preventive measures can be developed and government agencies receive population based data which may be relevant for legislative purposes.

  10. 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

  11. Fasa Registry on Acute Myocardial Infarction (FaRMI): Feasibility Study and Pilot Phase Results

    PubMed Central

    Askari, Alireza; Zakeri, Habib; Farjam, Mojtaba; Dehghan, Azizallah; Zendehdel, Kazem

    2016-01-01

    Background Myocardial infarction (MI) is the leading cause of death in Iran. Every attempt to improve treatment patterns and patient outcomes needs a surveillance system to both consider the efficacy and safety measures. Fasa Registry on Myocardial Infarction (FaRMI) is the first population-based registry for acute MI in Iran targeted to provide meticulous description of patients’ characteristics, to explore the management patterns of these patients, to discover the degree of adherence to the practice guidelines, and to investigate the determinants of poor in-hospital and later outcomes. Methods A diagnosis of acute MI (type I, II and III) was made upon the accepted criteria by the attending cardiologists and types IV and V MI were excluded. Two registrar nurses gathered data on demographics, place of residence and ethnicity, past medical history, risk factors, and the clinical course. Management patterns in the pre-hospital setting, during the hospital stay and at the discharge time were recorded. Routine laboratory results and cardiac biomarkers on three consecutive days were registered. Results pilot phase included the first 95 patients, 63.5% of whom were men and 31.5% were women. With a mean age of 62.89±13.75 years among participants, the rate of premature MI was 31.8%. ST segment elevation MI accounted for 68.2% cases and inferior wall was the most prevalent region involved followed by anterior and posterior walls. Discussion Obtained data on the characteristics of patients suffering an MI event revealed the major determinants of delay in initiation of therapies and contributors of poor outcome. Completeness of data was guaranteed upon involvement of multiple checkpoints and data quality was secured by means of automatic validation processes in addition to weekly physicians’ roundups. Conclusion Execution of FaRMI in the form presented is feasible and it will build up a comprehensive population-based registry for MI in the region. PMID:27907128

  12. Related hematopoietic cell donor care: is there a role for unrelated donor registries?

    PubMed

    Anthias, C; van Walraven, S M; Sørensen, B S; de Faveri, G N; Fechter, M; Cornish, J; Bacigalupo, A; Müller, C; Boo, M; Shaw, B E

    2015-05-01

    In almost half of allogeneic hematopoietic progenitor cell (HPC) transplants, a related donor (RD) is used, yet a lack of standardized guidelines means that their care is heterogeneous. Changes to regulatory standards aim to improve uniformity, but adherence to these regulations can prove logistically difficult for the transplant centers (TCs) managing RDs. Discussion has ensued around possible alternative models of related donor care and a session at the European Society for Blood and Marrow Transplantation (EBMT) annual meeting in 2013 debated the question of whether a role exists for unrelated donor registries in the management of 'related' donors. In this overview, we discuss the issues raised at this debate and the pros and cons of donor registry involvement in various aspects of RD management. By examining existing models of related donor care that have been adopted by members of the World Marrow Donor Association (WMDA), we look for ways to enhance and homogenize RD care, while also enabling transplant centers to meet standards required for mandatory accreditation.

  13. Haematuria on the Spanish Registry of Glomerulonephritis

    PubMed Central

    Yuste, Claudia; Rivera, Francisco; Moreno, Juan Antonio; López-Gómez, Juan Manuel

    2016-01-01

    Recent studies suggest a pathogenic role for glomerular haematuria among renal function. However, there is no data on the prevalence of haematuria from a large renal biopsy registry. We analysed the prevalence of gross (GH) and microscopic (mH) haematuria in 19,895 patients that underwent native renal biopsies from the Spanish Registry of Glomerulonephritis. Haematuria’s overall incidence was 63% (GH 8.6% and mH 55.1%), being more frequent in males (64.7% vs. 62.4%). GH was more prevalent in patients <18 years (21.3% vs. 7.7%). The commonest clinical presentation associated with GH was acute kidney injury (31.5%) and IgA Nephropathy (IgAN) (33.6%) was the most frequent histological finding. GH patients showed a significantly (p < 0.05) lower eGFR and proteinuria levels as compared with patients with mH and without haematuria. Moreover, mH was more prevalent in adults (56.3%). Nephrotic syndrome was the commonest clinical presentation in mH patients (32.2%) and IgAN (18.5%) the most frequent histological finding. In conclusion, haematuria, is a frequent urinalysis finding in patients underwent native renal biopsy. The most frequent histological finding in both GH and mH is IgAN. Whereas, GH is more frequent in young males with acute kidney injury, mH is commoner among adults with nephrotic syndrome. PMID:26818712

  14. Thyroid Cancer and Tumor Collaborative Registry (TCCR)

    PubMed Central

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B.; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  15. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    PubMed

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.

  16. The Kaiser Permanente Shoulder Arthroplasty Registry

    PubMed Central

    Ake, Christopher F; Burke, Mary F; Singh, Anshuman; Yian, Edward H; Paxton, Elizabeth W; Navarro, Ronald A

    2015-01-01

    Background and purpose Shoulder arthroplasty is being performed in the United States with increasing frequency. We describe the medium-term findings from a large integrated healthcare system shoulder arthroplasty registry. Patients and methods Shoulder arthroplasty cases registered between January 2005 and June 2013 were included for analysis. The registry included patient characteristics, surgical information, implant data, attrition, and patient outcomes such as surgical site infections, venous thromboembolism, and revision procedures. Results During the study period, 6,336 primary cases were registered. Median follow-up time for all primaries was 3.3 years; 461 cases were lost to follow-up by ending of health plan membership. Primary cases were predominantly female (56%) and white (81%), with an average age of 70 years. The most common reason for surgery was osteoarthritis in 60% of cases, followed by acute fracture (17%) and rotator cuff tear arthropathy (15%). In elective shoulder arthroplasty procedures, 200 all-cause revisions (4%) were reported, with glenoid wear being the most common reason. Interpretation Most arthroplasties were elective procedures: over half performed for osteoarthritis. Glenoid wear was the most common reason for revision of primary shoulder arthroplasty in elective cases. PMID:25727949

  17. EPA Facility Registry Service (FRS): RCRA

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste facilities that link to the Resource Conservation and Recovery Act Information System (RCRAInfo). EPA's comprehensive information system in support of the Resource Conservation and Recovery Act (RCRA) of 1976 and the Hazardous and Solid Waste Amendments (HSWA) of 1984, RCRAInfo tracks many types of information about generators, transporters, treaters, storers, and disposers of hazardous waste. 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. This data set contains the subset of FRS integrated facilities that link to RCRAInfo hazardous waste facilities once the RCRAInfo data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  18. EPA Facility Registry Service (FRS): LANDFILL

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste sites that link to the Landfill dataset. The Landfill dataset provides detailed operating statistics, geographic locations, and facility information for waste processing and disposal operations in the United States, compiled by the Waste Business Journal, Directory of Non-Hazardous Waste Sites (Date Published: November 5th, 2007). 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. This data set contains the subset of FRS integrated sites that link to the Landfill dataset once the Landfill data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  19. EPA Facility Registry Service (FRS): RBLC

    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 RACT/BACT/LAER Clearinghouse (RBLC). The RBLC database contains case-specific information on the air pollution technologies that have been required to reduce the emission of air pollutions from stationary sources. RACT, or Reasonably Available Control Technology, is required on existing sources in areas that are not meeting national ambient air quality standards. BACT, or Best Available Control Technology, is required on major new or modified sources in clean areas. LAER, or Lowest Achievable Emission Rate, is required on major new or modified sources in non-attainment areas. 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. This data set contains the subset of FRS integrated facilities that link to RBLC facilities once the RBLC data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  20. EPA Facility Registry Service (FRS): TRI

    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 Toxic Release Inventory (TRI) System. TRI is a publicly available EPA database reported annually by certain covered industry groups, as well as federal facilities. It contains information about more than 650 toxic chemicals that are being used, manufactured, treated, transported, or released into the environment, and includes information about waste management and pollution prevention activities. 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. This data set contains the subset of FRS integrated facilities that link to TRI facilities once the TRI data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  1. EPA Facility Registry Service (FRS): RMP

    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 Risk Management Plan (RMP) database. RMP stores the risk management plans reported by companies that handle, manufacture, use, or store certain flammable or toxic substances, as required under section 112(r) of the Clean Air Act (CAA). 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. This data set contains the subset of FRS integrated facilities that link to RMP facilities once the RMP data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  2. The Three Mile Island Population Registry.

    PubMed Central

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

    1983-01-01

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

  3. Haematuria on the Spanish Registry of Glomerulonephritis.

    PubMed

    Yuste, Claudia; Rivera, Francisco; Moreno, Juan Antonio; López-Gómez, Juan Manuel

    2016-01-28

    Recent studies suggest a pathogenic role for glomerular haematuria among renal function. However, there is no data on the prevalence of haematuria from a large renal biopsy registry. We analysed the prevalence of gross (GH) and microscopic (mH) haematuria in 19,895 patients that underwent native renal biopsies from the Spanish Registry of Glomerulonephritis. Haematuria's overall incidence was 63% (GH 8.6% and mH 55.1%), being more frequent in males (64.7% vs. 62.4%). GH was more prevalent in patients <18 years (21.3% vs. 7.7%). The commonest clinical presentation associated with GH was acute kidney injury (31.5%) and IgA Nephropathy (IgAN) (33.6%) was the most frequent histological finding. GH patients showed a significantly (p < 0.05) lower eGFR and proteinuria levels as compared with patients with mH and without haematuria. Moreover, mH was more prevalent in adults (56.3%). Nephrotic syndrome was the commonest clinical presentation in mH patients (32.2%) and IgAN (18.5%) the most frequent histological finding. In conclusion, haematuria, is a frequent urinalysis finding in patients underwent native renal biopsy. The most frequent histological finding in both GH and mH is IgAN. Whereas, GH is more frequent in young males with acute kidney injury, mH is commoner among adults with nephrotic syndrome.

  4. Interventions to enhance adherence to dietary advice for preventing and managing chronic diseases in adults

    PubMed Central

    Desroches, Sophie; Lapointe, Annie; Ratté, Stéphane; Gravel, Karine; Légaré, France; Turcotte, Stéphane

    2016-01-01

    Background It has been recognized that poor adherence can be a serious risk to the health and wellbeing of patients, and greater adherence to dietary advice is a critical component in preventing and managing chronic diseases. Objectives To assess the effects of interventions for enhancing adherence to dietary advice for preventing and managing chronic diseases in adults. Search methods We searched the following electronic databases up to 29 September 2010: The Cochrane Library (issue 9 2010), PubMed, EMBASE (Embase.com), CINAHL (Ebsco) and PsycINFO (PsycNET) with no language restrictions. We also reviewed: a) recent years of relevant conferences, symposium and colloquium proceedings and abstracts; b) web-based registries of clinical trials; and c) the bibliographies of included studies. Selection criteria We included randomized controlled trials that evaluated interventions enhancing adherence to dietary advice for preventing and managing chronic diseases in adults. Studies were eligible if the primary outcome was the client’s adherence to dietary advice. We defined ‘client’ as an adult participating in a chronic disease prevention or chronic disease management study involving dietary advice. Data collection and analysis Two review authors independently assessed the eligibility of the studies. They also assessed the risk of bias and extracted data using a modified version of the Cochrane Consumers and Communication Review Group data extraction template. Any discrepancies in judgement were resolved by discussion and consensus, or with a third review author. Because the studies differed widely with respect to interventions, measures of diet adherence, dietary advice, nature of the chronic diseases and duration of interventions and follow-up, we conducted a qualitative analysis. We classified included studies according to the function of the intervention and present results in a narrative table using vote counting for each category of intervention. Main results

  5. Patient reported outcomes in hip arthroplasty registries.

    PubMed

    Paulsen, Aksel

    2014-05-01

    PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test

  6. 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…

  7. 77 FR 24103 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-20

    ...FMCSA establishes a National Registry of Certified Medical Examiners (National Registry) with requirements that all medical examiners who conduct physical examinations for interstate commercial motor vehicle (CMV) drivers meet the following criteria: Complete certain training concerning FMCSA's physical qualification standards, pass a test to verify an understanding of those standards, and......

  8. Portuguese National Registry on Cardiac Electrophysiology, 2013 and 2014.

    PubMed

    Cavaco, Diogo; Morgado, Francisco; Bonhorst, Daniel

    2016-01-01

    The authors present the results of the national registry of electrophysiology of the Portuguese Association for Arrhythmology, Pacing and Electrophysiology (APAPE) for 2013 and 2014. The registry is annual and voluntary, and data are collected retrospectively. Data for electrophysiological studies, ablations and cardioverter-defibrillator implantations for 2013 and 2014 are presented. Developments over the years and their implications are analyzed and discussed.

  9. 27 CFR 24.114 - Registry of stills.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry of stills. 24.114 Section 24.114 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.114 Registry of...

  10. 27 CFR 18.23 - Registry of stills.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills. 18.23 Section 18.23 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  11. 27 CFR 19.79 - Registry of stills.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry of stills. 19.79 Section 19.79 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Obtaining a Permit Requirements for Registering A Plant § 19.79 Registry of stills. Section 29.55 of...

  12. 27 CFR 19.79 - Registry of stills.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills. 19.79 Section 19.79 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Obtaining a Permit Requirements for Registering A Plant § 19.79 Registry of stills. Section 29.55 of...

  13. 27 CFR 24.114 - Registry of stills.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills. 24.114 Section 24.114 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.114 Registry of...

  14. 27 CFR 19.169 - Registry of stills.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry of stills. 19.169 Section 19.169 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  15. 27 CFR 18.23 - Registry of stills.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills. 18.23 Section 18.23 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  16. 27 CFR 18.23 - Registry of stills.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry of stills. 18.23 Section 18.23 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  17. 27 CFR 18.23 - Registry of stills.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry of stills. 18.23 Section 18.23 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  18. 27 CFR 19.79 - Registry of stills.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills. 19.79 Section 19.79 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Obtaining a Permit Requirements for Registering A Plant § 19.79 Registry of stills. Section 29.55 of...

  19. 27 CFR 24.114 - Registry of stills.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills. 24.114 Section 24.114 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.114 Registry of...

  20. 27 CFR 24.114 - Registry of stills.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills. 24.114 Section 24.114 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.114 Registry of...

  1. 27 CFR 19.79 - Registry of stills.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills. 19.79 Section 19.79 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Obtaining a Permit Requirements for Registering A Plant § 19.79 Registry of stills. Section 29.55 of...

  2. 27 CFR 24.114 - Registry of stills.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry of stills. 24.114 Section 24.114 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.114 Registry of...

  3. 27 CFR 18.23 - Registry of stills.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills. 18.23 Section 18.23 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT... Registry of stills. The provisions of subpart C of part 29 of this chapter are applicable to stills...

  4. United States Transuranium and Uranium Registries. Annual report

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  5. The Corrona US registry of rheumatic and autoimmune diseases.

    PubMed

    Kremer, Joel M

    2016-01-01

    The Corrona US national registry collects data concerning patient status from both the rheumatologist and patient at routine clinical encounters. Corrona has functioning disease registries in rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies, psoriasis and inflammatory bowel disease. Corrona merges data concerning long-term effectiveness and safety, as well as comparative and cost effectiveness of agents to treat these autoimmune diseases.

  6. Perceptions of Punishment: How Registered Sex Offenders View Registries

    ERIC Educational Resources Information Center

    Tewksbury, Richard; Lees, Matthew B.

    2007-01-01

    Sex offender registries (SORs) are a societal response to serious and presumably dangerous criminal offenders. Existing research on registries has focused on demographic overviews of registrants, assessments of registrants' recidivism, accuracy and completeness of listed information, and collateral consequences for registrants. The present…

  7. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 1 2012-01-01 2012-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  8. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 1 2014-01-01 2014-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  9. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 1 2011-01-01 2011-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  10. 14 CFR 49.11 - 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. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  11. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 1 2013-01-01 2013-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  12. 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...

  13. 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...

  14. 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...

  15. 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...

  16. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 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...

  17. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 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...

  18. Adherence of Pseudomonas aeruginosa to contact lenses

    SciTech Connect

    Miller, M.J.

    1988-01-01

    The purpose of this research was to examined the interactions of P. aeruginosa with hydrogel contact lenses and other substrata, and characterize adherence to lenses under various physiological and physicochemical conditions. Isolates adhered to polystyrene, glass, and hydrogel lenses. With certain lens types, radiolabeled cells showed decreased adherence with increasing water content of the lenses, however, this correlation with not found for all lenses. Adherence to rigid gas permeable lenses was markedly greater than adherence to hydrogels. Best adherence occurred near pH 7 and at a sodium chloride concentration of 50 mM. Passive adhesion of heat-killed cells to hydrogels was lower than the adherence obtained of viable cells. Adherence to hydrogels was enhanced by mucin, lactoferrin, lysozyme, IgA, bovine serum albumin, and a mixture of these macromolecules. Adherence to coated and uncoated lenses was greater with a daily-wear hydrogel when compared with an extended-wear hydrogel of similar polymer composition. Greater adherence was attributed to a higher concentration of adsorbed macromolecules on the 45% water-content lens in comparison to the 55% water-content lens.

  19. 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

  20. Soil adherence to human skin

    SciTech Connect

    Driver, J.H.; Konz, J.J.; Whitmyre, G.K. )

    1989-12-01

    Dermal exposure to soils contaminated with toxic chemicals represents a potential public health hazard. These soils, contaminated with chemicals such as PCBs and dioxins, may be found at various locations throughout the US. Furthermore, dermal contact with pesticide-containing particles and contaminated soil particles is of importance for exposures to agricultural workers who reenter fields after pesticide application. With respect to dermal exposure to pesticide-contaminated particulate matter, several occurrences of human toxicity to ethyl parathion in citrus groves have been reported. These exposures resulted from dermal contact with high concentrations of the toxic transformation product paraoxon in soil dust contaminated as a result of application of pesticide to the overhead foliage of trees. To assess dermal exposure to chemically-contaminated soil at sites of concern, dermal adherence of soil must be determined prior to the assessment of dermal absorption. The purpose of the experiment reported herein was to determine the amount of soil (mg/cm{sup 2}) that adheres to adult hands under various soil conditions. These conditions include the type of soil, the organic content of the soil, and the particle size of the soil.

  1. Quality of trauma care and trauma registries.

    PubMed

    Pino Sánchez, F I; Ballesteros Sanz, M A; Cordero Lorenzana, L; Guerrero López, F

    2015-03-01

    Traumatic disease is a major public health concern. Monitoring the quality of services provided is essential for the maintenance and improvement thereof. Assessing and monitoring the quality of care in trauma patient through quality indicators would allow identifying opportunities for improvement whose implementation would improve outcomes in hospital mortality, functional outcomes and quality of life of survivors. Many quality indicators have been used in this condition, although very few ones have a solid level of scientific evidence to recommend their routine use. The information contained in the trauma registries, spread around the world in recent decades, is essential to know the current health care reality, identify opportunities for improvement and contribute to the clinical and epidemiological research.

  2. Development of a PTSD Population Registry

    DTIC Science & Technology

    2010-09-01

    R., Maserejian, N., Holowka, D.W., Rodriguez, P., Marx, B.P., Kang,  H., Vasterling, J.J. Wunderle, K.B.,  Rodier , N.A., Sloan D.S.,  Friedman, M.J...B.P., Kang,  H., Vasterling, J.J. Wunderle, K.B.,  Rodier , N.A., Sloan D.S.,  Friedman, M.J., Sleeper, L.A.  (2009). Creation of a PTSD Registry for...Rosen, R.C., Keane, T.M., Marx, B.P., Maserejian, N.N., Holowka, D.W., Kang, H.K.,  Vasterling, J.J.,  Rodier , N.A., Sleeper, L.A. (2010, June). The

  3. EPA Facility Registry Service (FRS): SDWIS

    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 Safe Drinking Water Information System (SDWIS). SDWIS contains information about public water systems and their violations of EPA's drinking water regulations. 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. This data set contains the subset of FRS integrated facilities that link to SDWIS facilities once the SDWIS data has been integrated into the FRS database. Additional information on FRS is available at the EPA website http://www.epa.gov/enviro/html/fii/index.html.

  4. The Danish National Multiple Myeloma Registry

    PubMed Central

    Gimsing, Peter; Holmström, Morten O; Klausen, Tobias Wirenfelt; Andersen, Niels Frost; Gregersen, Henrik; Pedersen, Robert Schou; Plesner, Torben; Pedersen, Per Trøllund; Frederiksen, Mikael; Frølund, Ulf; Helleberg, Carsten; Vangsted, Annette; de Nully Brown, Peter; Abildgaard, Niels

    2016-01-01

    Aim The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. Study population All newly diagnosed patients with multiple myeloma (MM), smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. Main variables The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. Descriptive data Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients with solitary plasmacytomas were registered. Registration completeness of new patients is ~100%. A data validation study performed in 2013–2014 by the Danish Myeloma Study Group showed >95% data correctness. Conclusion The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research. PMID:27822103

  5. Patient perceptions of voice therapy adherence.

    PubMed

    van Leer, Eva; Connor, Nadine P

    2010-07-01

    Patient perspectives of behavioral voice therapy, including perspectives of treatment adherence, have not been formally documented. Because treatment adherence is, to a large extent, determined by patient beliefs, assessment of patient perspectives is integral to the study of adherence. Fifteen patients who had undergone at least two sessions of direct voice therapy for a variety of voice disorders/complaints were interviewed about their perspectives on voice therapy, with a particular focus on adherence. Interviews were transcribed and analyzed for content according to qualitative methods. Three common content themes emerged from the transcripts: Voice Therapy is Hard, Make it Happen, and The Match Matters. Findings were compared with reports of patient experiences in other behavioral interventions, such as diet and exercise, and related to existing theoretical models of behavior change and therapeutic process. This study yields information toward the development of scales to measure adherence-related constructs and strategies to improve treatment adherence in voice therapy.

  6. 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

  7. Factors influencing bacterial adherence to biomaterials.

    PubMed

    Merritt, K; Chang, C C

    1991-01-01

    The adherence of bacteria to implanted medical devices is believed to be important in the development of implant associated infections. Measures which reduce bacterial adherence should reduce the incidence of these infections. However, in order to assess the importance of adherence, the effectiveness of methods to reduce adherence, and compare data from different laboratories, the conditions of the in vitro studies on adherence need to be specified. There are currently no correct and incorrect methods, however, methods used need to be carefully described. The studies reported here indicate that the definition of adherence needs to be established, with the use of polystyrene as the reference material recommended. Since the adherent organisms lose adherence traits with culture, cultures must be selected for adherence regularly. It is important to control the number of organisms/ml but the volume used is not important. The medium used to grow the organisms and the use of stationary, rocking or flow conditions will alter adherence and need to be specified and be consistent within a set of experiments. Culture conditions, methods of rinsing the material, methods of elution and counting, or direct counting of organisms on the material need to be specified. Finally, as much information as possible on the bulk and surface properties of the material should be provided. The handling of the material for the experiments should be careful and defined. Fingerprints, contact with protein, wet surfaces vs dry surfaces, etc., will all affect the subsequent adherence. The materials should not be re-used since the removal of the adherent proteins or the biofilm is very difficult. Progress can be made in this important area if the details of procedures are specified.

  8. Medication Adherence: A Call for Action

    PubMed Central

    Bosworth, Hayden B.; Granger, Bradi B.; Mendys, Phil; Brindis, Ralph; Burkholder, Rebecca; Czajkowski, Susan M.; Daniel, Jodi G.; Ekman, Inger; Ho, Michael; Johnson, Mimi; Kimmel, Stephen E.; Liu, Larry Z; Musaus, John; Shrank, William H.; Buono, Elizabeth Whalley; Weiss, Karen; Granger, Christopher B.

    2013-01-01

    Poor adherence to efficacious cardiovascular related medications has led to considerable morbidity, mortality, and avoidable health care costs. This paper provides results of a recent think tank meeting in which various stakeholder groups representing key experts from consumers, community health providers, the academic community, decision-making government officials (FDA, NIH, etc), and industry scientists met to evaluate the current status of medication adherence and provide recommendations for improving outcomes. Below, we review the magnitude of the problem of medication adherence, prevalence, impact, and cost. We then summarize proven effective approaches and conclude with a discussion of recommendations to address this growing and significant public health issue of medication non adherence. PMID:21884856

  9. Adherence of sputtered titanium carbides

    NASA Technical Reports Server (NTRS)

    Brainard, W. A.; Wheeler, D. R.

    1979-01-01

    The study searches for interface treatment that would increase the adhesion of TiC coating to nickel- and titanium-base alloys. Rene 41 (19 wt percent Cr, 11 wt percent Mo, 3 wt percent Ti, balance Ni) and Ti-6Al-4V (6 wt percent Al, 4 wt percent V, balance Ti) are considered. Adhesion of the coatings is evaluated in pin-and disk friction tests. The coatings and interface regions are examined by X-ray photoelectron spectroscopy. Results suggest that sputtered refractory compound coatings adhere best when a mixed compound of coating and substrate metals is formed in the interfacial region. The most effective type of refractory compound interface appears to depend on both substrate and coating material. A combination of metallic interlayer deposition and mixed compound interface formation may be more effective for some substrate coating combinations than either alone.

  10. Adherence in ulcerative colitis: an overview

    PubMed Central

    Testa, Anna; Castiglione, Fabiana; Nardone, Olga Maria; Colombo, Giorgio L

    2017-01-01

    Medication adherence is an important challenge while treating chronic illnesses, such as ulcerative colitis (UC), that require a long-term management to induce and maintain clinical remission. This review provides an overview of the role that medication adherence plays in the routine management of UC, with a focus on the results of a recent Italian study reporting the perception of patients with UC regarding adherence to treatment. A literature analysis was conducted on topics, such as measurement of adherence in real practice, causes, risk factors and consequences of non-adherence and strategies, to raise patients’ adherence. Most of the data refer to adherence to 5-aminosalicylic acid, and standard of care for the induction and maintenance of remission in UC. The adherence rate to 5-aminosalicylic acid is low in clinical practice, thus resulting in fivefold higher risk of relapse, likely increased risk of colorectal cancer, reduced quality of life and higher health care costs for in- and outpatient settings. There are various causes affecting non-adherence to therapy: forgetfulness, high cost of drugs, lack of understanding of the drug regimen – which are sometimes due to insufficient explanation by the specialist – anxiety created by possible adverse events, lack of confidence in physicians’ judgment and complex dosing regimen. The last aspect negatively influences adherence to medication both in clinical trial settings and in real-world practice. Regarding this feature, mesalamine in once-daily dosage may be preferable to medications with multiple doses per day because the simplification of treatment regimens improves adherence. PMID:28260866

  11. Adherence to secondary prophylaxis and disease recurrence in 536 Brazilian children with rheumatic fever

    PubMed Central

    2010-01-01

    Background More than 15 million people worldwide have rheumatic fever (RF) and rheumatic heart disease due to RF. Secondary prophylaxis is a critical cost-effective intervention for preventing morbidity and mortality related to RF. Ensuring adequate adherence to secondary prophylaxis for RF is a challenging task. This study aimed to describe the rates of recurrent episodes of RF, quantify adherence to secondary prophylaxis, and examine the effects of medication adherence to the rates of RF in a cohort of Brazilian children and adolescents with RF. Methods This retrospective study took place in the Pediatric Rheumatology outpatient clinic at a tertiary care hospital (Instituto de Puericultura e Pediatria Martagão Gesteira) in Rio de Janeiro, Brazil, and included patients with a diagnosis of RF from 1985 to 2005. Results 536 patients with RF comprised the study sample. Recurrent episodes of RF occurred in 88 of 536 patients (16.5%). Patients with a recurrent episode of RF were younger (p < 0.0001), more frequently males (p = 0.003), and less adherent (p < 0.0001) to secondary prophylaxis than patients without RF recurrence. Non-adherence to medication at any time during follow-up was detected in 35% of patients. Rates of non-adherence were higher in the group of patients that were lost to follow-up (42%) than in the group of patients still in follow-up (32%) (p = 0.027). Appointment frequency was inadequate in 10% of patients. Higher rates of inadequate appointment frequency were observed among patients who were eventually lost to follow-up (14.5%) than in patients who were successfully followed-up (8%) (p = 0.022). 180 patients (33.5%) were lost to follow up at some point in time. Conclusions We recommend implementation of a registry, and a system of active search of missing patients in every service responsible for the follow-up of RF patients. Measures to increase adherence to secondary prophylaxis need to be implemented formally, once non-adherence to secondary

  12. Patient-centered Outcomes of Medication Adherence Interventions: Systematic Review and Meta-Analysis

    PubMed Central

    Conn, Vicki S.; Ruppar, Todd M.; Enriquez, Maithe; Cooper, Pamela S.

    2016-01-01

    Objectives This systematic review used meta-analytic procedures to synthesize changes in patient-centered outcomes following medication adherence interventions. Methods Strategies to locate studies included online searches of 13 databases and 19 research registries, hand searches of 57 journals, and author and ancestry searches of all eligible studies. Search terms included patient compliance, medication adherence, and related terms. Searches were conducted for all studies published since 1960. Eligible published or unpublished primary studies tested medication adherence interventions and reported medication knowledge, quality of life, physical function, and symptom outcomes. Primary study attributes and outcome data were reliably coded. Overall standardized mean differences (SMDs) were analyzed using random-effects models. Dichotomous and continuous moderator analyses and funnel plots were used to explore risks of bias. Results Thorough searching located eligible 141 reports. The reports included 176 eligible comparisons between treatment and control subjects across 23,318 subjects. Synthesis across all comparisons yielded statistically significant SMDs for medication knowledge (d = 0.449), quality of life (d = 0.127), physical function (d = 0.142), and symptoms (d = 0.182). The overall SMDs for studies focusing on subsamples of patients with specific illnesses were more modest but also statistically significant. Of specific symptoms analyzed (depression, anxiety, pain, energy/vitality, cardiovascular, and respiratory), only anxiety failed to show a significant improvement following medication adherence interventions. Most SMDs were significantly heterogeneous, and risk of bias analyses suggested links between study quality and SMDs. Conclusions Modest but significant improvements in patient-centered outcomes followed medication adherence interventions. PMID:27021763

  13. Medication adherence in patients with myotonic dystrophy and facioscapulohumeral muscular dystrophy.

    PubMed

    Fitzgerald, Bryan P; Conn, Kelly M; Smith, Joanne; Walker, Andrew; Parkhill, Amy L; Hilbert, James E; Luebbe, Elizabeth A; Moxley III, Richard T

    2016-12-01

    Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are the two most common adult muscular dystrophies and have progressive and often disabling manifestations. Higher levels of medication adherence lead to better health outcomes, especially important to patients with DM and FSHD because of their multisystem manifestations and complexity of care. However, medication adherence has not previously been studied in a large cohort of DM type 1 (DM1), DM type 2 (DM2), and FSHD patients. The purpose of our study was to survey medication adherence and disease manifestations in patients enrolled in the NIH-supported National DM and FSHD Registry. The study was completed by 110 DM1, 49 DM2, and 193 FSHD patients. Notable comorbidities were hypertension in FSHD (44 %) and DM2 (37 %), gastroesophageal reflux disease in DM1 (24 %) and DM2 (31 %) and arrhythmias (29 %) and thyroid disease (20 %) in DM1. Each group reported high levels of adherence based on regimen complexity, medication costs, health literacy, side effect profile, and their beliefs about treatment. Only dysphagia in DM1 was reported to significantly impact medication adherence. Approximately 35 % of study patients reported polypharmacy (taking 6 or more medications). Of the patients with polypharmacy, the DM1 cohort was significantly younger (mean 55.0 years) compared to DM2 (59.0 years) and FSHD (63.2 years), and had shorter disease duration (mean 26 years) compared to FSHD (26.8 years) and DM2 (34.8 years). Future research is needed to assess techniques to ease pill swallowing in DM1 and to monitor polypharmacy and potential drug interactions in DM and FSHD.

  14. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-11-19

    ... AFFAIRS Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request AGENCY... information technology. Title: Agent Orange Registry Code Sheet, VA Form 10-9009. OMB Control Number: 2900..., Agent Orange Registry Code Sheet. The registry will provide a mechanism that will catalogue...

  15. A Review of Treatment Adherence Measurement Methods

    ERIC Educational Resources Information Center

    Schoenwald, Sonja K.; Garland, Ann F.

    2013-01-01

    Fidelity measurement is critical for testing the effectiveness and implementation in practice of psychosocial interventions. Adherence is a critical component of fidelity. The purposes of this review were to catalogue adherence measurement methods and assess existing evidence for the valid and reliable use of the scores that they generate and the…

  16. Current Situation of Medication Adherence in Hypertension

    PubMed Central

    Vrijens, Bernard; Antoniou, Sotiris; Burnier, Michel; de la Sierra, Alejandro; Volpe, Massimo

    2017-01-01

    Despite increased awareness, poor adherence to treatments for chronic diseases remains a global problem. Adherence issues are common in patients taking antihypertensive therapy and associated with increased risks of coronary and cerebrovascular events. Whilst there has been a gradual trend toward improved control of hypertension, the number of patients with blood pressure values above goal has remained constant. This has both personal and economic consequences. Medication adherence is a multifaceted issue and consists of three components: initiation, implementation, and persistence. A combination of methods is recommended to measure adherence, with electronic monitoring and drug measurement being the most accurate. Pill burden, resulting from free combinations of blood pressure lowering treatments, makes the daily routine of medication taking complex, which can be a barrier to optimal adherence. Single-pill fixed-dose combinations simplify the habit of medication taking and improve medication adherence. Re-packing of medication is also being utilized as a method of improving adherence. This paper presents the outcomes of discussions by a European group of experts on the current situation of medication adherence in hypertension. PMID:28298894

  17. 75 FR 65629 - Modification of the Annual National Registry Fee

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-26

    ... From the Federal Register Online via the Government Publishing Office FEDERAL FINANCIAL... Subcommittee (ASC) of the Federal Financial Institutions Examination Council. ACTION: Notice of modification of... appraisals for federally related transactions. Through the National Registry, lenders and consumers...

  18. A New Use for Your Cancer Registry Data.

    PubMed

    Fleming, Mary

    2016-01-01

    The following article describes the development of a new data use for cancer registry information. The registry in Hartford Hospital recently participated in a summer program for high school students interested in the field of health care. After an introduction to the registry and its core data elements, a research topic was assigned to the students. Using de-identified registry data consisting of 101 non-small cell lung cancer patients who were diagnosed in 2015, 4 students in the oncology work group (Zirui Hao, Princess Harmon, Nathaniel Nicholson and Kajal Shah) from the Academy of Aerospace and Engineering in Windsor, Connecticut were charged with analyzing and drawing conclusions from the data. The students focused on what correlations could be made between patients with the same comorbidity factors using staging as a designator.

  19. 5. Photocopy of plat (from Portland Registry of Deeds, Book ...

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

    5. Photocopy of plat (from Portland Registry of Deeds, Book 148, Page 385) delineator and date unknown 'COPY OF PLAN OF PARK STREET PROPRIETARY' - Park Street Block, Park, Spring & Gray Streets, Portland, Cumberland County, ME

  20. Motivating patient adherence to allergic rhinitis treatments.

    PubMed

    Bender, Bruce G

    2015-03-01

    Patient nonadherence significantly burdens the treatment of allergic rhinitis (AR). Fewer than half of prescribed doses of intranasal corticosteroid medication are taken. The challenges for immunotherapies are even greater. While sustained treatment for 3 to 5 years is required for full benefit, most patients receiving immunotherapy, either subcutaneous or sublingual, stop treatment within the first year. Although research into interventions to improve AR adherence is lacking, lessons learned from adherence interventions in other chronic health conditions can be applied to AR. Two well-established, overriding models of care-the chronic care model and patient-centered care-can improve adherence. The patient-centered care model includes important lessons for allergy providers in their daily practice, including understanding and targeting modifiable barriers to adherence. Additionally, recent studies have begun to leverage health information and communication technologies to reach out to patients and promote adherence, extending patient-centered interventions initiated by providers during office visits.

  1. [What can and cannot be achieved by registries : Perspective of the registry working group of the German Network of Health Services Research].

    PubMed

    Neugebauer, E A M; Stausberg, J

    2016-06-01

    In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated.

  2. German Cranial Reconstruction Registry (GCRR): protocol for a prospective, multicentre, open registry

    PubMed Central

    Giese, Henrik; Sauvigny, Thomas; Sakowitz, Oliver W; Bierschneider, Michael; Güresir, Erdem; Henker, Christian; Höhne, Julius; Lindner, Dirk; Mielke, Dorothee; Pannewitz, Robert; Rohde, Veit; Scholz, Martin; Schuss, Patrick; Regelsberger, Jan

    2015-01-01

    Introduction Owing to increasing numbers of decompressive craniectomies in patients with malignant middle cerebral artery infarction, cranioplastic surgery becomes more relevant. However, the current literature mainly consists of retrospective single-centre (evidence class III) studies. This leads to a wide variability of technical approaches and clinical outcomes. To improve our knowledge about the key elements of cranioplasty, which may help optimising clinical treatment and long-term outcome, a prospective multicentre registry across Germany, Austria and Switzerland will be established. Methods All patients undergoing cranioplastic surgery in participating centres will be invited to join the registry. Technical methods, materials, medical history, adverse events and clinical outcome measures, including modified Rankin scale and EQ-5D, will be assessed at several time points. Patients will be accessible to inclusion either at initial decompressive surgery or when cranioplasty is planned. Scheduled monitoring will be carried out at time of inclusion and subsequently at time of discharge, if any readmission is necessary, and at follow-up presentation. Cosmetic results and patient satisfaction will also be assessed. Collected data will be managed and statistically analysed by an independent biometric institute. The primary endpoint will be mortality, need for operative revision and neurological status at 3 months following cranioplasty. Ethics and dissemination Ethics approval was obtained at all participating centres. The registry will provide reliable prospective evidence on surgical techniques, used materials, adverse events and functional outcome, to optimise patient treatment. We expect this study to give new insights in the treatment of skull defects and to provide a basis for future evidence-based therapy regarding cranioplastic surgery. Trial registration number This trial is indexed in the German Clinical Trials Register (DRKS-ID: DRKS00007931). The

  3. The growing number of hemophilia registries: Quantity vs. quality.

    PubMed

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required.

  4. The evolution of an operative registry--a commentary.

    PubMed

    Buck, A S; Reeder, J; Holzman, R; Burger, L M

    1989-03-01

    The Operative Registry, also known as DA Form 4108, constitutes the basic, geographically focused, sequential log of operative activities for any given Army Medical Treatment Facility. The information provided for the Registry, with specific refinements, constitutes an essential data base for quality assurance and utilization review. The experience at Madigan Army Medical Center in developing the structure and function of this computerized data base is summarized.

  5. Registry data trends of total ankle replacement use.

    PubMed

    Roukis, Thomas S; Prissel, Mark A

    2013-01-01

    Joint arthroplasty registry data are meaningful when evaluating the outcomes of total joint replacement, because they provide unbiased objective information regarding survivorship and incidence of use. Critical evaluation of the registry data information will benefit the surgeon, patient, and industry. However, the implementation and acceptance of registry data for total ankle replacement has lagged behind that of hip and knee implant arthroplasty. Currently, several countries have national joint arthroplasty registries, with only some procuring information for total ankle replacement. We performed an electronic search to identify publications and worldwide registry databanks with pertinent information specific to total ankle replacement to determine the type of prostheses used and usage trends over time. We identified worldwide registry data from 33 countries, with details pertinent to total ankle replacement identified in only 6 countries. The obtained information was arbitrarily stratified into 3 distinct periods: 2000 to 2006, 2007 to 2010, and 2011. Within these study periods, the data from 13 total ankle replacement systems involving 3,980 ankles were identified. The vast majority (97%) of the reported ankle replacements were 3-component, mobile-bearing, uncemented prostheses. Three usage trends were identified: initial robust embracement followed by abrupt disuse, minimal use, and initial embracement followed by sustained growth in implantation. Before the widespread acceptance of new total ankle replacements, the United States should scrutinize and learn from the international registry data and develop its own national joint registry that would include total ankle replacement. Caution against the adoption of newly released prostheses, especially those without readily available revision components, is recommended.

  6. EPA Facility Registry Service (FRS): ICIS

    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 Integrated Compliance Information System (ICIS). When complete, ICIS will provide a database that will contain integrated enforcement and compliance information across most of EPA's programs. The vision for ICIS is to replace EPA's independent databases that contain enforcement data with a single repository for that information. Currently, ICIS contains all Federal Administrative and Judicial enforcement actions and a subset of the Permit Compliance System (PCS), which supports the National Pollutant Discharge Elimination System (NPDES). ICIS exchanges non-sensitive enforcement/compliance activities, non-sensitive formal enforcement actions and NPDES information with FRS. This web feature service contains the enforcement/compliance activities and formal enforcement action related facilities; the NPDES facilities are contained in the PCS_NPDES web feature service. 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 f

  7. The National Anesthesia Clinical Outcomes Registry.

    PubMed

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

    2015-12-01

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

  8. The Danish Neuro-Oncology Registry

    PubMed Central

    Hansen, Steinbjørn

    2016-01-01

    Aim of database The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. Study population DNOR has registered clinical data on diagnostics and treatment of all adult patients diagnosed with glioma since January 1, 2009, which numbers approximately 400 patients each year. Main variables The database contains information about symptoms, presurgical magnetic resonance imaging (MRI) characteristics, performance status, surgical procedures, residual tumor on postsurgical MRI, postsurgical complications, diagnostic and histology codes, radiotherapy, and chemotherapy. Descriptive data DNOR publishes annual reports on descriptive data. During the period of registration, postoperative MRI is performed in a higher proportion of the patients (Indicator II), and a higher proportion of patients have no residual tumor after surgical resection of the primary tumor (Indicator IV). Further data are available in the annual reports. The indicators reflect only minor elements of handling brain tumor patients. Another advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. Conclusion The establishment of DNOR has optimized the quality in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research. PMID:27822109

  9. Italian Registry of Congenital Bleeding Disorders

    PubMed Central

    Giampaolo, Adele; Abbonizio, Francesca; Arcieri, Romano; Hassan, Hamisa Jane

    2017-01-01

    In Italy, the surveillance of people with bleeding disorders is based on the National Registry of Congenital Coagulopathies (NRCC) managed by the Italian National Institute of Health (Istituto Superiore di Sanità). The NRCC collects epidemiological and therapeutic data from the 54 Hemophilia Treatment Centers, members of the Italian Association of Hemophilia Centres (AICE). The number of people identified with bleeding disorders has increased over the years, with the number rising from approx. 7000 in 2000 to over 11,000 in 2015. The NRCC includes 4020 patients with hemophilia A and 859 patients with hemophilia B. The prevalence of the rare type 3 vWD is 0.20/100,000 inhabitants. Less common congenital bleeding disorders include the following deficiencies: Factor I (fibrinogen), Factor II (prothrombin), Factor V, Factor VII, Factor X, Factor XI and Factor XIII, which affect 1953 patients. Hepatitis C Virus (HCV) infection affects 1561 patients, more than 200 of whom have two infections (HCV + HIV). Estimated hemophilia-related drug consumption in 2015 was approx. 550 million IU of FVIII for hemophilia A patients and approx. 70 million IU of FIX for hemophilia B patients. The NRCC, with its bleeding disorder data set, is a tool that can provide answers to fundamental questions in public health, monitoring care provision and drug treatment, as well as facilitating clinical and epidemiological research. PMID:28335488

  10. RENASICA II: A Mexican acute myocardial infarction registry that highlights the importance of regional registries

    PubMed Central

    Al Suwaidi, Jassim

    2014-01-01

    Cardiovascular diseases are the leading cause of death, worldwide, with disproportionate representation in low- and middle-income countries (LMICs). The Registro Nacional de los Síndromes Coronarios Agudos II (RENASICA II) investigators reported smoking, hypertension and diabetes were the main risk factors among Mexican patients presenting with ST-elevation myocardial infarction (STEMI). Fibrinolytic therapy was administered to 37%. Primary percutaneous coronary intervention (PPCI) was performed in only 15% of patients. 30-day mortality was 10%. This study highlights the importance of conducting regional registries for quality improvement. PMID:25780784

  11. RENASICA II: A Mexican acute myocardial infarction registry that highlights the importance of regional registries.

    PubMed

    Al Suwaidi, Jassim

    2014-01-01

    Cardiovascular diseases are the leading cause of death, worldwide, with disproportionate representation in low- and middle-income countries (LMICs). The Registro Nacional de los Síndromes Coronarios Agudos II (RENASICA II) investigators reported smoking, hypertension and diabetes were the main risk factors among Mexican patients presenting with ST-elevation myocardial infarction (STEMI). Fibrinolytic therapy was administered to 37%. Primary percutaneous coronary intervention (PPCI) was performed in only 15% of patients. 30-day mortality was 10%. This study highlights the importance of conducting regional registries for quality improvement.

  12. Design and implementation of an ICU incident registry.

    PubMed

    van der Veer, Sabine; Cornet, Ronald; de Jonge, Evert

    2005-01-01

    Due to its complexity intensive care is vulnerable to errors. On the ICU Adults of the AMC (Amsterdam, the Netherlands) the available registries used for error reporting did not give insight in the occurrence of unwanted events, and did not lead to preventive measures. Therefore, a new registry has been developed on the basis of a literature study on the various terms and definitions that refer to unintended events, and on the methods to register and monitor them. As this registry intends to provide an overall insight into errors, a neutral term ('incident') -which does not imply guilt or blame- has been sought together with a broad definition. The attributes of an incident further describe the unwanted event, but they should not form an impediment for the ICU nurses and physicians to report. The properties of a registry that contribute to making it accessible and user friendly have been determined. This has resulted in an electronic registry where incidents can be reported rapidly, voluntarily, anonymously and free of legal consequences. Evaluation is required to see if the new registry indeed provides the ICU management with the intended information on the current situation on incidents. For further refinement of the design, additional development and adjustments are required. However, we expect that the awareness of errors of the ICU personnel has already improved, forming the first step to increased patient safety.

  13. Design and implementation of an ICU incident registry.

    PubMed

    van der Veer, Sabine; Cornet, Ronald; de Jonge, Evert

    2007-01-01

    Due to its complexity intensive care is vulnerable to errors. On the ICU adults of the AMC (Amsterdam, The Netherlands) the available registries used for error reporting did not give insight in the occurrence of unwanted events, and did not lead to preventive measures. Therefore, a new registry has been developed on the basis of a literature study on the various terms and definitions that refer to unintended events, and on the methods to register and monitor them. As this registry intends to provide an overall insight into errors, a neutral term ('incident') -- which does not imply guilt or blame -- has been sought together with a broad definition. The attributes of an incident further describe the unwanted event, but they should not form an impediment for the ICU nurses and physicians to report. The properties of a registry that contribute to making it accessible and user friendly have been determined. This has resulted in an electronic registry where incidents can be reported rapidly, voluntarily, anonymously and free of legal consequences. Evaluation is required to see if the new registry indeed provides the ICU management with the intended information on the current situation on incidents. For further refinement of the design, additional development and adjustments are required. However, we expect that the awareness of errors of the ICU personnel has already improved, forming the first step to increased patient safety.

  14. Lessons learned from the Pediatric Cardiomyopathy Registry (PCMR) Study Group.

    PubMed

    Wilkinson, James D; Westphal, Joslyn A; Bansal, Neha; Czachor, Jason D; Razoky, Hiedy; Lipshultz, Steven E

    2015-08-01

    Cardiomyopathy is a rare disorder of the heart muscle, affecting 1.13 cases per 100,000 children, from birth to 18 years of age. Cardiomyopathy is the leading cause of heart transplantation in children over the age of 1. The Pediatric Cardiomyopathy Registry funded in 1994 by the National Heart, Lung, and Blood Institute was established to examine the epidemiology of the disease in children below 18 years of age. More than 3500 children across the United States and Canada have been enrolled in the Pediatric Cardiomyopathy Registry, which has followed-up these patients until death, heart transplantation, or loss to follow-up. The Pediatric Cardiomyopathy Registry has provided the most in-depth illustration of this disease regarding its aetiology, clinical course, associated risk factors, and patient outcomes. Data from the registry have helped in guiding the clinical management of cardiomyopathy in children under 18 years of age; however, questions still remain regarding the most clinically effective diagnostic and treatment approaches for these patients. Future directions of the registry include the use of next-generation whole-exome sequencing and cardiac biomarkers to identify aetiology-specific treatments and improve diagnostic strategies. This article provides a brief synopsis of the work carried out by the Pediatric Cardiomyopathy Registry since its inception, including the current knowledge on the aetiologies, outcomes, and treatments of cardiomyopathy in children.

  15. Transient improvement of urticaria induces poor adherence as assessed by Morisky Medication Adherence Scale-8.

    PubMed

    Kaneko, Sakae; Masuda, Koji; Hiragun, Takaaki; Inomata, Naoko; Furue, Masutaka; Onozuka, Daisuke; Takeuchi, Satoshi; Murota, Hiroyuki; Sugaya, Makoto; Saeki, Hidehisa; Shintani, Yoichi; Tsunemi, Yuichiro; Abe, Shinya; Kobayashi, Miwa; Kitami, Yuki; Tanioka, Miki; Imafuku, Shinichi; Abe, Masatoshi; Hagihara, Akihito; Morisky, Donald E; Katoh, Norito

    2015-11-01

    Poor adherence to medication is a major public health challenge. Here, we aimed to determine the adherence to oral and topical medications and to analyze underlying associated factors using the translated Japanese version of Morisky Medication Adherence Scale-8 regarding urticaria treatment. Web-based questionnaires were performed for 3096 registered dermatological patients, along with a subanalysis of 751 registered urticaria patients in this study. The adherence to oral medication was significantly associated with the frequency of hospital visits. Variables that affected the adherence to topical medication included age and experience of drug effectiveness. The rate of responses that "It felt like the symptoms had improved" varied significantly among the dermatological diseases treated with oral medications. Dermatologists should be aware that adherence to the treatment of urticaria is quite low. Regular visits and active education for patients with urticaria are mandatory in order to achieve a good therapeutic outcome by increasing the adherence.

  16. Adherence to Antihypertensive Medications in Iranian Patients.

    PubMed

    Behnood-Rod, Azin; Rabbanifar, Omid; Pourzargar, Pirouz; Rai, Alireza; Saadat, Zahra; Saadat, Habibollah; Moharamzad, Yashar; Morisky, Donald E

    2016-01-01

    Introduction. Appropriate adherence to medication is still a challenging issue for hypertensive patients. We determined adherence to antihypertensive(s) and its associated factors among 280 Iranian patients. Methods. They were recruited consecutively from private and university health centers and pharmacies in four cities. The validated Persian version of the 8-item Morisky Medication Adherence Scale (MMAS-8) was administered to measure adherence. Results. Mean (±SD) overall MMAS-8 score was 5.75 (±1.88). About half of the sample (139 cases, 49.6%) showed low adherence (MMAS-8 score < 6). There was a negative linear association between the MMAS-8 score and systolic BP (r = -0.231, P < 0.001) as well as diastolic BP (r = -0.280, P < 0.001). In linear regression model, overweight/obesity (B = -0.52, P = 0.02), previous history of admission to emergency services due to hypertensive crisis (B = -0.79, P = 0.001), and getting medication directly from drugstore without refill prescription in hand (B = -0.51, P = 0.04) were factors recognized to have statistically significant association with the MMAS-8 score. Conclusion. Antihypertensive adherence was unsatisfactory. We suggest that health care providers pay special attention and make use of the aforementioned findings in their routine visits of hypertensive patients to recognize those who are vulnerable to poor adherence.

  17. Adherence to Antihypertensive Medications in Iranian Patients

    PubMed Central

    Behnood-Rod, Azin; Rabbanifar, Omid; Pourzargar, Pirouz; Rai, Alireza; Saadat, Zahra; Saadat, Habibollah; Moharamzad, Yashar; Morisky, Donald E.

    2016-01-01

    Introduction. Appropriate adherence to medication is still a challenging issue for hypertensive patients. We determined adherence to antihypertensive(s) and its associated factors among 280 Iranian patients. Methods. They were recruited consecutively from private and university health centers and pharmacies in four cities. The validated Persian version of the 8-item Morisky Medication Adherence Scale (MMAS-8) was administered to measure adherence. Results. Mean (±SD) overall MMAS-8 score was 5.75 (±1.88). About half of the sample (139 cases, 49.6%) showed low adherence (MMAS-8 score < 6). There was a negative linear association between the MMAS-8 score and systolic BP (r = −0.231, P < 0.001) as well as diastolic BP (r = −0.280, P < 0.001). In linear regression model, overweight/obesity (B = −0.52, P = 0.02), previous history of admission to emergency services due to hypertensive crisis (B = −0.79, P = 0.001), and getting medication directly from drugstore without refill prescription in hand (B = −0.51, P = 0.04) were factors recognized to have statistically significant association with the MMAS-8 score. Conclusion. Antihypertensive adherence was unsatisfactory. We suggest that health care providers pay special attention and make use of the aforementioned findings in their routine visits of hypertensive patients to recognize those who are vulnerable to poor adherence. PMID:27069676

  18. Data available from birth and death registries and cancer registries in the United States

    SciTech Connect

    Wallin, B.L. |; Houser, A.R.; Merrill, D.W.; Selvin, S. |

    1994-01-01

    In the United States, cancer registries have been compiling data for decades, and state vital statistics offices have been compiling birth and death data for nearly a century. Although this information has been well used for disease surveillance and various studies, it could be better exploited by making it more readily available, reducing the duplication of effort that occurs when researchers at the private, city, county, state, and federal levels work separately on their data collection and disease investigations. This report summarizes the nationwide availability of birth and death records and cancer registry data, with particular emphasis on subcounty geographic detail, such as zip code and census tract. Birth and death data are available at the county level for the entire United States from the National Center for Health Statistics. However, county level data are inadequate for small area studies of potential environmental hazards. Hazards of current interest to the Department of Energy (DOE) include DOE facilities, nuclear power plants, and sources of electromagnetic radiation such as broadcasting towers and power lines.

  19. Medication Adherence in the General Population

    PubMed Central

    Glombiewski, Julia A.; Nestoriuc, Yvonne; Rief, Winfried; Glaesmer, Heide; Braehler, Elmar

    2012-01-01

    Background Adherence to medication is low in specific populations who need chronic medication. However, adherence to medication is also of interest in a more general fashion, independent of specific populations or side effects of particular drugs. If clinicians and researchers expect patients to show close to full adherence, it is relevant to know how likely the achievement of this goal is. Population based rates can provide an estimate of efforts needed to achieve near complete adherence in patient populations. The objective of the study was to collect normative data for medication nonadherence in the general population. Methods and Findings We assessed 2,512 persons (a representative sample of German population). Adherence was measured by Rief Adherence Index. We also assessed current medication intake and side effects. We found that at least 33% of Germans repeatedly fail to follow their doctor's recommendations regarding pharmacological treatments and only 25% of Germans describe themselves as fully adherent. Nonadherence to medication occurs more often in younger patients with higher socioeconomic status taking short-term medications than in older patients with chronic conditions. Experience with medication side effects was the most prominent predictor of nonadherence. Conclusions The major strengths of our study are a representative sample and a novel approach to assess adherence. Nonadherece seems to be commonplace in the general population. Therefore adherence cannot be expected per se but needs special efforts on behalf of prescribers and public health initiatives. Nonadherence to medication should not only be considered as a drug-specific behaviour problem, but as a behaviour pattern that is independent of the prescribed medication. PMID:23272064

  20. Medication Adherence Interventions That Target Subjects with Adherence Problems: Systematic Review and Meta-analysis

    PubMed Central

    Conn, Vicki S.; Ruppar, Todd M.; Enriquez, Maithe; Cooper, Pam

    2015-01-01

    Background Inadequate medication adherence is a pervasive, under-recognized cause of poor health outcomes. Many intervention trials designed to improve medication adherence have targeted adults with adherence problems. No previous reviews have synthesized the effectiveness of medication adherence interventions focused on subjects with medication adherence difficulties. Objective This systematic review and meta-analysis synthesized findings from medication adherence intervention studies conducted among adults with medication adherence difficulties. Methods Primary research studies were eligible for inclusion if they tested an intervention designed to increase medication adherence among adults with documented adherence difficulties and reported medication adherence behavior outcomes. Comprehensive search strategies of 13 computerized databases, author and ancestry searches, and hand searches of 57 journals were used to locate eligible primary research. Participant demographics, intervention characteristics, and methodological features were reliably coded from reports along with medication adherence outcomes. Effect sizes for outcomes were calculated as standardized mean differences, and random effects models were used to estimate overall mean effects. Exploratory dichotomous and continuous variable moderator analyses were employed to examine potential associations between medication adherence effect size and sample, intervention, and methodological characteristics. Results Data were extracted from 53 reports of studies involving 8,243 individual primary study participants. The overall standardized mean difference effect size for treatment vs. control subjects was 0.301. For treatment pre- vs. post-intervention comparisons, the overall effect size was 0.533. Significantly larger effect sizes were associated with interventions incorporating prompts to take medications than interventions lacking medication prompts (0.497 vs. 0.234). Larger effect sizes were also found

  1. Acoustic response from adherent targeted contrast agents

    PubMed Central

    Zhao, Shukui; Kruse, Dustin E.; Ferrara, Katherine W.; Dayton, Paul A.

    2006-01-01

    In ultrasonic molecular imaging, encapsulated micron-sized gas bubbles are tethered to a blood vessel wall by targeting ligands. A challenging problem is to detect the echoes from adherent microbubbles and distinguish them from echoes from non-adherent agents and tissue. Echoes from adherent contrast agents are observed to include a high amplitude at the fundamental frequency, and significantly different spectral shape compared with free agents (p < 0.0003). Mechanisms for the observed acoustical difference and potential techniques to utilize these differences for molecular imaging are proposed. PMID:17225437

  2. [The EUCORE registry: objectives and general results].

    PubMed

    Cercenado, Emilia; Pachón, Jerónimo

    2012-02-01

    The European Cubicin Outcomes Registry and Experience (EUCORE) is an ongoing, retrospective, European, post-marketing, non-comparative database of daptomycin use in patients that have received at least one daptomycin dose. The primary objective is to evaluate the clinical outcomes of patients treated with this drug. This article presents the analysis of patients included in Spanish institutions from January 2006 to March 2010. A total of 726 patients were included: 66% males, 48.6% aged more than 65 years old, and 70% with comorbidities. Daptomycin was administered in the outpatient setting in 20.3% of the patients. More than 50% of the patients received a dose of 6 mg/kg/day and in 80% daptomycin was administered as a rescue therapy. The median treatment duration was 14 days. The infections treated were bacteremia (32.51%), skin and soft tissue infections (31.4%), infectious endocarditis (14.33%), infections associated with prosthetic materials (10.9%), osteoarticular infections (6.1%), and others. Infections were caused by Staphylococcus aureus (40.5%; 14.4% methicilllin-resistant), coagulase-negative staphylococci (34.5%), enterococci (11.7%) and group viridans streptococci (2.9%). The overall rate of clinical success was 78.4% (81.5% when administered as first-line therapy and 77.6% when administered as rescue therapy). In patients with renal failure, the efficacy of daptomycin was lower. At the end of therapy, 8.7% of patients showed a decrease in creatinine clearance, and in 25 patients creatine kinase values were more than 10 times higher than normal values. Daptomycin is a safe and effective antimicrobial agent for the treatment of severe infections caused by Gram-positive bacteria.

  3. The Danish Registry of Diabetic Retinopathy

    PubMed Central

    Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina; Bek, Toke; Grauslund, Jakob; Laugesen, Caroline Schmidt; Lund-Andersen, Henrik; Cerqueira, Charlotte; Andresen, Jens

    2016-01-01

    Aim of database To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations. Target population The target population includes all patients diagnosed with diabetes. Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments and in private ophthalmological practice. In 2014–2015, DiaBase included data collected from 77,968 diabetes patients. Main variables The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data with respect to age, sex, best corrected visual acuity, screening frequency, grading of diabetic retinopathy and maculopathy at each visit, progression/regression of diabetic eye disease, and prevalence of blindness were obtained. Data analysis from DiaBase’s latest annual report (2014–2015) indicates that the prevalence of no diabetic retinopathy, nonproliferative diabetic retinopathy, and proliferative diabetic retinopathy is 78%, 18%, and 4%, respectively. The percentage of patients without diabetic maculopathy is 97%. The proportion of patients with regression of diabetic retinopathy (20%) is greater than the proportion of patients with progression of diabetic retinopathy (10%). Conclusion The collection of data from diabetic eye screening is still expanding in Denmark. Analysis of the data collected during the period 2014–2015 reveals an overall decrease of diabetic retinopathy compared to the previous year, although the number of patients newly diagnosed with diabetes has been increasing in Denmark. DiaBase is a useful tool to observe the quality of screening

  4. Detection of Low Adherence in Rural Tuberculosis Patients in China: Application of Morisky Medication Adherence Scale

    PubMed Central

    Xu, Minlan; Markström, Urban; Lyu, Juncheng; Xu, Lingzhong

    2017-01-01

    The detection and analysis of cases of low medication adherence is important for helping to control tuberculosis (TB). The purpose of this study was to detect low adherence in rural TB patients by using the eight-item Morisky Medication Adherence Scale of Chinese version (C-MMAS-8) and to further analyze the adherence-related variables. A total of 358 rural TB patients recruited through multi-stage randomized sampling participated in the survey. Data were collected by the use of interviewer-led questionnaires. First, the reliability and validity of the C-MMAS-8 were determined. Second, the adherence level was assessed, and factors related to low adherence were analyzed by using Pearson’s chi-square test and then in multiple logistic regression model. Finally, the prediction of the logistic model was assessed with Receiver Operating Characteristic (ROC) curves. The C-MMAS-8 could be used to detect low adherence in TB patients with good reliability and validity. By using the referred cutoff points of MMAS-8, it was found that more than one-third of the participants had low medication adherence. Further analysis revealed the variables of being older, a longer treatment time, and being depressive were significantly related to low adherence. The ROC of the model was assessed as good using the cutoff point. We conclude that appropriately tailored strategies are needed for health-care providers to help rural TB patients cope with low medication adherence. PMID:28257075

  5. Establishment of an Australian National Genetic Heart Disease Registry.

    PubMed

    Ingles, Jodie; McGaughran, Julie; Vohra, Jitendra; Weintraub, Robert G; Davis, Andrew; Atherton, John; Semsarian, Christopher

    2008-12-01

    A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family members. A Registry Advisory Committee has been established under the NHMRC Guidelines, and includes a representative from each major recruitment centre. This committee approves all decisions relating to the Registry including approval of research studies. A National Genetic Heart Disease Registry will provide a valuable resource to further our knowledge of the clinical and genetic aspects of these diseases. Since most of the current data about the prevalence, natural history and outcomes of genetic heart diseases has emanated from the United States and Europe, characterising these Australian populations will be of significant benefit, allowing for more informed and specific health care planning and resource provision.

  6. Adherence to consensus-based diagnosis and treatment guidelines in adult soft-tissue sarcoma patients: a French prospective population-based study†

    PubMed Central

    Mathoulin-Pélissier, S.; Chevreau, C.; Bellera, C.; Bauvin, E.; Savès, M.; Grosclaude, P.; Albert, S.; Goddard, J.; Le Guellec, S.; Delannes, M.; Bui, B. N.; Mendiboure, J.; Stoeckle, E.; Coindre, J. M.; Kantor, G.; Kind, M.; Cowppli-Bony, A.; Hoppe, S.; Italiano, A.

    2014-01-01

    Background Soft-tissue sarcomas (STSs) are rare tumors with varied histological presentations. Management and treatment are thus complex, but crucial for patient outcomes. We assess adherence to adult STS management guidelines across two French regions (10% of the French population). We also report standardized incidence. Patients and methods STS patients diagnosed from 1 November 2006 to 31 December 2007 were identified from pathology reports, medical hospital records, and cancer registries. Guideline adherence was assessed by 23 criteria (validated by Delphi consensus method), and age and sex-standardized incidence rates estimated. Associations between patient, treatment, and institutional factors and adherence with three major composite criteria relating to diagnostic imaging and biopsy as well as multidisciplinary team (MDT) case-review are reported. Results Two hundred and seventy-four patients were included (57.7% male, mean age 60.8 years). Practices were relatively compliant overall, with over 70% adherence for 10 criteria. Three criteria with perfect Delphi consensus had low adherence: receiving histological diagnosis before surgery, adequacy of histological diagnosis (adherence around 50% for both), and MDT discussion before surgery (adherence <30%). Treatment outside of specialized centers was associated with lower adherence for all three composite criteria, and specific tumor sites and/or features were associated with lower adherence for diagnostic imaging, methods, and MDT meetings. STS standardized incidence rates were 4.09 (European population) and 3.33 (World) /100 000 inhabitants. Conclusions Initial STS diagnosis and treatment across all stages (imaging, biopsy, and MDT meetings) need improving, particularly outside specialized centers. Educational interventions to increase surgeon's sarcoma awareness and knowledge and to raise patients' awareness of the importance of seeking expert care are necessary. PMID:24285018

  7. Japan Renal Biopsy Registry and Japan Kidney Disease Registry: Committee Report for 2009 and 2010.

    PubMed

    Sugiyama, Hitoshi; Yokoyama, Hitoshi; Sato, Hiroshi; Saito, Takao; Kohda, Yukimasa; Nishi, Shinichi; Tsuruya, Kazuhiko; Kiyomoto, Hideyasu; Iida, Hiroyuki; Sasaki, Tamaki; Higuchi, Makoto; Hattori, Motoshi; Oka, Kazumasa; Kagami, Shoji; Kawamura, Tetsuya; Takeda, Tetsuro; Hataya, Hiroshi; Fukasawa, Yuichiro; Fukatsu, Atsushi; Morozumi, Kunio; Yoshikawa, Norishige; Shimizu, Akira; Kitamura, Hiroshi; Yuzawa, Yukio; Matsuo, Seiichi; Kiyohara, Yutaka; Joh, Kensuke; Nagata, Michio; Taguchi, Takashi; Makino, Hirofumi

    2013-04-01

    The Japan Renal Biopsy Registry (J-RBR) was started in 2007 and the Japan Kidney Disease Registry (J-KDR) was then started in 2009 by the Committee for Standardization of Renal Pathological Diagnosis and the Committee for the Kidney Disease Registry of the Japanese Society of Nephrology. The purpose of this report is to describe and summarize the registered data from 2009 and 2010. For the J-KDR, data were collected from 4,016 cases, including 3,336 (83.1 %) by the J-RBR and 680 (16.9 %) other cases from 59 centers in 2009, and from 4,681 cases including 4,106 J-RBR cases (87.7 %) and 575 other cases (12.3 %) from 94 centers in 2010, including the affiliate hospitals. In the J-RBR, 3,165 native kidneys (94.9 %) and 171 renal grafts (5.1 %) and 3,869 native kidneys (94.2 %) and 237 renal grafts (5.8 %) were registered in 2009 and 2010, respectively. Patients younger than 20 years of age comprised 12.1 % of the registered cases, and those 65 years and over comprised 24.5 % of the cases with native kidneys in 2009 and 2010. The most common clinical diagnosis was chronic nephritic syndrome (55.4 % and 50.0 % in 2009 and 2010, respectively), followed by nephrotic syndrome (22.4 % and 27.0 %); the most frequent pathological diagnosis as classified by the pathogenesis was IgA nephropathy (31.6 % and 30.4 %), followed by primary glomerular diseases (except IgA nephropathy) (27.2 % and 28.1 %). Among the primary glomerular diseases (except IgA nephropathy) in the patients with nephrotic syndrome, membranous nephropathy was the most common histopathology in 2009 (40.3 %) and minor glomerular abnormalities (50.0 %) were the most common in 2010 in native kidneys in the J-RBR. Five new secondary and longitudinal research studies by the J-KDR were started in 2009 and one was started in 2010.

  8. Medication adherence behaviors of Medicare beneficiaries

    PubMed Central

    Carr-Lopez, Sian M; Shek, Allen; Lastimosa, Janine; Patel, Rajul A; Woelfel, Joseph A; Galal, Suzanne M; Gundersen, Berit

    2014-01-01

    Background Medication adherence is crucial for positive outcomes in the management of chronic conditions. Comprehensive medication consultation can improve medication adherence by addressing intentional and unintentional nonadherence. The Medicare Part D prescription drug benefit has eliminated some cost barriers. We sought to examine variables that impact self-reported medication adherence behaviors in an ambulatory Medicare-beneficiary population and to identify the factors that influence what information is provided during a pharmacist consultation. Methods Medicare beneficiaries who attended health fairs in northern California were offered medication therapy management (MTM) services during which demographic, social, and health information, and responses to survey questions regarding adherence were collected. Beneficiaries were also asked which critical elements of a consultation were typically provided by their community pharmacist. Survey responses were examined as a function of demographic, socioeconomic, and health-related factors. Results Of the 586 beneficiaries who were provided MTM services, 575 (98%) completed the adherence questions. Of responders, 406 (70%) reported taking medications “all of the time”. Of the remaining 169 (30%), the following reasons for nonadherence were provided: 123 (73%) forgetfulness; 18 (11%) side effects; and 17 (10%) the medication was not needed. Lower adherence rates were associated with difficulty paying for medication, presence of a medication-related problem, and certain symptomatic chronic conditions. Of the 532 who completed survey questions regarding the content of a typical pharmacist consultation, the topics included: 378 (71%) medication name and indication; 361 (68%) administration instructions; 307 (58%) side effects; 257 (48%) missed-dose instructions; and 245 (46%) interactions. Subsidy recipients and non-English speakers were significantly less likely to be counseled on drug name, indication, and side

  9. Antiplatelet resistance in outpatients with monitored adherence.

    PubMed

    Walter, Philipp N; Tsakiris, Dimitrios A; Romanens, Michel; Arnet, Isabelle; Hersberger, Kurt E

    2014-01-01

    Antiplatelet resistance with aspirin and clopidogrel has been associated with clinical, cellular and pharmacogenetic factors; and non-adherence has been considered as a major contributor to resistance in outpatients. We aimed at assessing factors to resistance when adherence to the antiplatelet drugs and all other oral solid drugs was controlled for. In a pilot study, we tested arachidonic acid and/or ADP-induced in vitro platelet aggregation of 82 outpatients with chronic aspirin and/or clopidogrel treatment before and after a one-week period of measuring the patient's adherence with the polymedication electronic monitoring system (POEMS). Resistance was found in 20% (aspirin; n = 69) and 25% (clopidogrel; n = 32) of the patients after monitored adherence. Mean platelet aggregation was not (aspirin) or non-significantly (clopidogrel) lowered when compared to baseline. Diabetes mellitus and inflammation were consistently associated with resistance to both drugs, but CYP2C19 polymorphisms could not be confirmed as predictors of clopidogrel response. Electronically compiled multidrug dosing histories allowed the concomitant intake of high-dose lipophilic statins to be identified as a risk factor of impaired response to clopidogrel and revealed that exposure to further potential drug-drug interactions (DDIs) was too low for analysis. Multidrug adherence monitoring allowed thus dismissing non-adherence as a major contributor to resistance and inter-individual response variability in an outpatient setting. Additionally, it allowed analysing the impact of DDIs according to the actual exposure to the potentially interfering drugs. Further studies based on this methodology are essential to prevent misleading results due to incomplete adherence and gain additional insight into the impact of timing adherence on antiplatelet drug response.

  10. [Hungarian Heart Failure Registry 2015-2016. Preliminary results].

    PubMed

    Nyolczas, Noémi; Heltai, Krisztina; Borbély, Attila; Habon, Tamás; Járai, Zoltán; Sziliczei, Erzsébet; Stadler, Péter; Faludi, Réka; Herczeg, Béla; Papp, Előd; Lakatos, Ferenc; Nagy, Katalin; Katona, András; Kovács, Imre; Tomcsányi, János; Nagy, András; Sepp, Róbert

    2017-01-01

    Heart failure is associated with a poor prognosis despite significant advances in the pharmacological and device therapy and incurs very high cost because of frequent hospitalizations. Therefore, professional high-quality care is essential for both patients and the healthcare system. The best way to evaluate the quality of care for a particular disease is the use of disease-specific registries. Until now, there has not been a registry evaluating characteristics and management of heart failure patients in Hungary. For that reason, the Hungarian Society of Cardiology initiated the set-up of the Hungarian Heart Failure Registry. The Aim of this paper is to present the goals, methods and first year results of the Hungarian Heart Failure Registry. The goal of the Registry is to create a modern, web-based database that summarizes the data of large number of patients who are currently or were previously admitted to hospital or who are currently or were previously patients in an outpatient department due to severe heart failure (NYHA III-IV). Currently 17 cardiology departments participate in the development of the Registry. The planned number of patients is 2000. Initially follow-up was planned for one year (pilot study). After the evaluation of the relevant experiences of the pilot study, long-term follow-up is planned. The Registry collects information about the type of heart failure (heart failure with reduced - LVEF≤45% - vs. preserved - LVEF>45% - ejection fraction), etiology, co-morbidities, diagnostic methods, treatment as well as morbidity and mortality. After the first year, assessing the baseline parameters of 698 patients enrolled in the Registry we found that the majority of patients (87.8%) has heart failure with reduced ejection fraction and in 39.8% of the patients heart failure has an ischaemic origin. The most frequent co-morbidity was hypertension followed by diabetes, renal insufficiency and COPD. The patients were treated with ACE inhibitors or ARBs

  11. What roles should population-based cancer registries be playing in the 21st century? Reflections on the Asian Cancer Registry Forum, Bangkok, February 2014.

    PubMed

    Roder, David

    2014-01-01

    Cancer registries have fundamental roles in cancer surveillance, research, and health services planning, monitoring and evaluation. Many are now assuming a broader role by contributing data for health-service management, alongside data inputs from other registries and administrative data sets. These data are being integrated into de-identified databases using privacy-protecting data linkage practices. Structured pathology reporting is increasing registry access to staging and other prognostic descriptors. Registry directions need to vary, depending on local need, barriers and opportunities. Flexibility and adaptability will be essential to optimize registry contributions to cancer control.

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

    PubMed Central

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

    2014-01-01

    Objective 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. Methods 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. Results 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. Conclusions 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. PMID:25276372

  13. Epidemiology and Registry Studies of Stroke in Japan

    PubMed Central

    2013-01-01

    Stroke is the most prevalent cardiovascular disease in Japan. This review introduces two epidemiologic studies and four registry studies of stroke in Japan. The Hisayama Study was begun as a population-based prospective cohort study of cerebrovascular and cardiovascular diseases in 1961 in the town of Hisayama. Most of the deceased subjects of the study underwent autopsy examinations from the beginning of the study. Changes in stroke trends in the last 50 years were clarified by comparison of data from different study cohorts registered every 13 to 14 years. The Suita Study was based on a random sampling of Japanese urban residents. Several reports from this study showed the significance of pre-hypertension, as well as hypertension, as a risk factor for stroke by itself and in combination with other underlying characteristics. In addition, the Japan Multicenter Stroke Investigators' Collaboration (J-MUSIC), the Japan Standard Stroke Registry Study, the Fukuoka Stroke Registry, and the Stroke Acute Management with Urgent Risk-factor Assessment and Improvement (SAMURAI) rt-PA Registry are explained as registry studies involving Japanese stroke patients. PMID:24324936

  14. Design and implementation of a multi-institution immunization registry.

    PubMed

    Jenders, R A; Dasgupta, B; Mercedes, D; Clayton, P D

    1998-01-01

    One of every four children in the USA is underimmunized. Surveys of children in New York City have documented rates of appropriate immunization as low as 37% in certain populations in northern Manhattan. In response to this, government and private agencies have undertaken efforts to improve immunization rates. As part of one such multiinstitution effort in northern Manhattan, we have begun implementation of a computer-based immunization registry. Key features of this registry system include adaptation of legacy software in order to perform initial capture of data in electronic format; design of a user interface using a World Wide Web server that provides data review and capture functions with appropriate security; implementation of a registry database with links to the server, communication links between hospital registration systems, a Master Patient Index, community providers and the central registry; and integration of decision support in the form of Medical Logic Modules encoded in the Arden Syntax. We discuss our design of this multi-institution immunization registry and implementation efforts to date.

  15. Nephrology registry gives specialty control of quality data.

    PubMed

    Weinstein, Adam; Beckrich, Amy; Singer, Dale

    2015-11-01

    It is important for providers and practices to begin working with registry level data. Submitting data to a qualified clinical data registry currently satisfies Meaningful Use Stage II menu set items. In the future, with the rollout of MIPS and the increasing focus on sharing risk, registry data will be used as a benchmark for both publicly-reported performance (the physician compare program will be linked to provider-level QCDR data) and modifications to reimbursement. It is important to remember that PQRS data is the basis for the value based modifier now and MIPS- related quality data after 2018. The RPA has launched and is evolving a unique and versatile nephrology-specific data collection and analytics tool. In collaboration with the American Society of Diagnostic and Interventional Nephrology, vascular access measures will be added to the registry for 2016. The registry and the analytics platform is a tier of software operating above your practice management system and EHR and, if data can be obtained, it can span all the locations in which nephrologists provide care.

  16. Epidemiology and registry studies of stroke in Japan.

    PubMed

    Toyoda, Kazunori

    2013-01-01

    Stroke is the most prevalent cardiovascular disease in Japan. This review introduces two epidemiologic studies and four registry studies of stroke in Japan. The Hisayama Study was begun as a population-based prospective cohort study of cerebrovascular and cardiovascular diseases in 1961 in the town of Hisayama. Most of the deceased subjects of the study underwent autopsy examinations from the beginning of the study. Changes in stroke trends in the last 50 years were clarified by comparison of data from different study cohorts registered every 13 to 14 years. The Suita Study was based on a random sampling of Japanese urban residents. Several reports from this study showed the significance of pre-hypertension, as well as hypertension, as a risk factor for stroke by itself and in combination with other underlying characteristics. In addition, the Japan Multicenter Stroke Investigators' Collaboration (J-MUSIC), the Japan Standard Stroke Registry Study, the Fukuoka Stroke Registry, and the Stroke Acute Management with Urgent Risk-factor Assessment and Improvement (SAMURAI) rt-PA Registry are explained as registry studies involving Japanese stroke patients.

  17. Microbicide clinical trial adherence: insights for introduction

    PubMed Central

    Woodsong, Cynthia; MacQueen, Kathleen; Amico, K Rivet; Friedland, Barbara; Gafos, Mitzy; Mansoor, Leila; Tolley, Elizabeth; McCormack, Sheena

    2013-01-01

    After two decades of microbicide clinical trials it remains uncertain if vaginally- delivered products will be clearly shown to reduce the risk of HIV infection in women and girls. Furthermore, a microbicide product with demonstrated clinical efficacy must be used correctly and consistently if it is to prevent infection. Information on adherence that can be gleaned from microbicide trials is relevant for future microbicide safety and efficacy trials, pre-licensure implementation trials, Phase IV post-marketing research, and microbicide introduction and delivery. Drawing primarily from data and experience that has emerged from the large-scale microbicide efficacy trials completed to-date, the paper identifies six broad areas of adherence lessons learned: (1) Adherence measurement in clinical trials, (2) Comprehension of use instructions/Instructions for use, (3) Unknown efficacy and its effect on adherence/Messages regarding effectiveness, (4) Partner influence on use, (5) Retention and continuation and (6) Generalizability of trial participants' adherence behavior. Each is discussed, with examples provided from microbicide trials. For each of these adherence topics, recommendations are provided for using trial findings to prepare for future microbicide safety and efficacy trials, Phase IV post-marketing research, and microbicide introduction and delivery programs. PMID:23561044

  18. Interventions to increase adherence to acne treatment

    PubMed Central

    Moradi Tuchayi, Sara; Alexander, Tiffany M; Nadkarni, Anish; Feldman, Steven R

    2016-01-01

    Background Adherence to acne medication is poor and is a major reason why treatment plans are ineffective. Recognizing solutions to nonadherence is critical. Objective The purpose of this study is to describe the hurdles associated with acne nonadherence and to provide mechanisms on how to ameliorate them. Methods PubMed database was searched. Of the 419 search results, 29 articles were reviewed to identify hurdles to adherence and corresponding solutions. Results Hurdles to primary nonadherence where the medication is not even started, include lack of knowledge, confusion about usage, weak physician–patient relationship, fear of adverse reactions, and cost. Secondary nonadherence hurdles where the medication is started but is not taken as directed include lack of results, complex regimens, side effects, busy lifestyle, forgetfulness, inconvenience, and psychiatric comorbidity. Solutions to these hurdles include treatment simplification, technology, and dynamic education. Limitations Adherence is affected by numerous factors, but available literature analyzing acne adherence and interventions to improve adherence to treatment is limited. Conclusion There are several hurdles in adhering to acne treatment. Recognition of these hurdles and finding appropriate solutions may be as important to treatment outcomes as choosing the right medication to prescribe. PMID:27784999

  19. Effective extraction of Arabidopsis adherent seed mucilage by ultrasonic treatment

    PubMed Central

    Zhao, Xianhai; Qiao, Lijun; Wu, Ai-Min

    2017-01-01

    The Arabidopsis seed coat is composed of two layers of mucilage, a water-soluble non-adherent outer layer and an adherent inner layer. The non-adherent mucilage can easily be extracted by gentle shaking. However, adherent mucilage is extremely difficult to dissociate from the seed coat. Despite various treatments to extract the adherent mucilage, including EDTA, ammonium oxalate, dilute alkali or acid washes, most of it remains on the seed coat. Here, we show for the first time the extraction of almost all of the adherent mucilage from the Arabidopsis seed coat. Our results demonstrate that ultrasonic treatment was able to extract the adherent mucilage effectively within 20 seconds. Adherent mucilage, like non-adherent mucilage, is mainly composed of rhamnogalacturonan I (RG I). The crystalline cellulose content in adherent mucilage was measured as 3.7 mg g−1 of dry seed. Compared with non-adherent mucilage, the adherent mucilage exhibits relatively stable levels of sugar under various environmental conditions. In all cases, adherent mucilage showed higher levels of sugar than non-adherent mucilage. The cell wall remnant could associate with the adherent mucilage, which could prevent the extraction of the adherent mucilage. Our results show that ultrasonic treatment is an effective method for the quick extraction of Arabidopsis adherent mucilage with little effort. PMID:28091592

  20. Peritoneal Dialysis Registry With 2012 Survey Report.

    PubMed

    Hasegawa, Takeshi; Nakai, Shigeru; Moriishi, Misaki; Ito, Yasuhiko; Itami, Noritomo; Masakane, Ikuto; Hanafusa, Norio; Taniguchi, Masatomo; Hamano, Takayuki; Shoji, Tetsuo; Yamagata, Kunihiro; Shinoda, Toshio; Kazama, Junichiro; Watanabe, Yuzo; Shigematsu, Takashi; Marubayashi, Seiji; Morita, Osamu; Wada, Atsushi; Hashimoto, Seiji; Suzuki, Kazuyuki; Kimata, Naoki; Wakai, Kenji; Fujii, Naohiko; Ogata, Satoshi; Tsuchida, Kenji; Nishi, Hiroshi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu; Nakamoto, Hidetomo

    2015-12-01

    Since 2009, the peritoneal dialysis (PD) registry survey has been carried out as part of the annual nationwide survey conducted by the Statistical Survey Committee of the Japanese Society for Dialysis Therapy with the cooperation of the Japanese Society for Peritoneal Dialysis. In this report, the current status of PD patients is presented on the basis of the results of the survey conducted at the end of 2012. The subjects were PD patients who lived in Japan and participated in the 2012 survey. Descriptive analysis of various items was performed, which included the current status of the combined use of PD and another dialysis method such as hemodialysis (HD) or hemodiafiltration (HDF), the method of exchanging dialysate, the use of an automated peritoneal dialysis (APD) machine, and the rates of peritonitis and catheter exit-site infection. From the results of the facility survey in 2012, the number of PD patients was 9514, a decrease of 128 from 2011. Among the entire dialysis patient population, 3.1% were PD patients, a decrease of 0.1%. Among the studied patients, 347 had a peritoneal catheter and underwent peritoneal lavage, 175 were started on PD in 2012 but introduced to other blood purification methods in the same year, and 1932 underwent both PD and another dialysis method such as HD or HDF. The percentage of patients who underwent PD and another dialysis method increased with PD vintage: <1 year, 4.8%; 1 to <2 years, 9.2%; 2 to <4 years, 16.3%; 4 to <8 years, 32.0%; and ≥8 years, 47.5%. The percentage of PD patients who completely manually exchanged the dialysate was 29.8%. The percentages of PD patients who used a double-bag exchange system with ultraviolet-light irradiation and those who used the same system but with a sterile connecting device were 54.7 and 13.9%, respectively. The percentage of patients on PD for <1 year using an APD machine was 43.4%, and it decreased with a PD vintage of ≥2 years. The mean rate of peritonitis was 0.22 per patient

  1. The NIH Office of Rare Diseases Research Patient Registry Standard: A Report from the University of New Mexico’s Oculopharyngeal Muscular Dystrophy Patient Registry

    PubMed Central

    Daneshvari, Shamsi; Youssof, Sarah; Kroth, Philip J.

    2013-01-01

    Patient registries remove barriers to performing research by assembling patient cohorts and data in a systematic, efficient, and proactive manner. Consequently, registries are a valuable strategy for facilitating research and scientific discovery. Registries for rare diseases are arguably even more valuable since there is difficulty in assembling cohorts of adequate size for study. Recently, the NIH Office of Rare Diseases Research created a rare disease registry Standard to facilitate research across multiple registries. We implemented the Standard for the Oculopharyngeal Muscular Dystrophy patient registry created at the University of New Mexico Health Sciences Center. We performed a data element analysis for each Common Data Element defined in the Standard. Problems included the use of previous HL7 versions, non-structured data types, and a recent update to the Standard. Overall, the Standard is an excellent first step toward standardizing patient registries to facilitate work on broader questions and promote novel interdisciplinary collaborations. PMID:24551336

  2. Health technology assessment in Australia: a role for clinical registries?

    PubMed

    Scott, Anna Mae

    2016-03-31

    Objective Health technology assessment (HTA) is a process of assessing evidence to inform policy decisions about public subsidy of new drugs and medical procedures. Where evidence is uncertain but the technology itself is promising, funders may recommend funding on an interim basis. It is unknown whether evidence from clinical registries is used to resolve uncertainties identified in interim-funded decisions made by Australian HTA bodies. Therefore, the present study evaluated the role of evidence from clinical registries in resolving evidence uncertainties identified by the Medical Services Advisory Committee (MSAC).Methods All HTAs considered by MSAC between 1998 and 2015 were reviewed and assessments that recommended interim funding were identified. The MSAC website was searched to identify reassessments of these recommendations and sources of evidence used to resolve the uncertainties were identified.Results Of 173 HTA reports considered by MSAC, 17 (10%) contained an interim funding recommendation. Eight recommendations cited uncertainty around safety, 15 cited uncertainty around clinical effectiveness and 13 cited uncertainty around economics (cost-effectiveness and/or budget impact). Of the 17 interim funding recommendations, 11 (65%) have been reassessed. Only two reassessments relied on clinical registry evidence to resolve evidence gaps identified at the time of the interim funding recommendation.Conclusions Clinical registries are underused as a source of evidence for resolving uncertainties around promising new health technologies in Australia. An open dialogue between stakeholders on the role of registries in this context is needed.What is known about the topic? HTA is a process of assessing the evidence to inform policy decisions about public subsidy of new health technologies (e.g. pharmaceuticals, diagnostic tests, medical procedures). Where evidence is uncertain but the technology under evaluation is promising, funders may recommend the funding of

  3. REAC/TS Radiation Accident Registry: An Overview

    SciTech Connect

    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 share of deaths has occurred in medical settings.

  4. Exploring the Usefulness of Occupational Exposure Registries for Surveillance

    PubMed Central

    Genesove, Leon; Moore, Kris; Del Bianco, Ann; Kramer, Desre

    2014-01-01

    Objective: The ongoing presence of asbestos in products used across workplaces in Canada reinforces the importance of occupational exposure surveillance. This study evaluates the usefulness of the Ontario Asbestos Workers Registry. Methods: The study includes 30,829 workers aged 15 to 80 years. Researchers reported on the data quality and analyzed the proportions of workers exposed by industry, and standardized rates by geographic areas and over time. Results: The incidence of exposure started to decrease around 1990; but about 2000 workers were still exposed annually until 2006. Results showed large geographical disparities. Unexpectedly, workers from industries other than construction reported exposure. Conclusions: The Ontario Asbestos Workers Registry is a useful but challenging source of information for the surveillance of asbestos exposure in Ontario. The registry could benefit from well-defined surveillance objectives, a clear exposure definition, systematic enforcement, regular data analyses, and results dissemination. PMID:25162835

  5. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia

    PubMed Central

    2013-01-01

    Background The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany. Methods/Design The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010) and prospective (from 01.10.2010) collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case–control study was implemented based on the registry that also included the collection of various biological materials. Retrospectively, 420 patients (222 men and 198 women) were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing. Discussion The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms. PMID:23414001

  6. 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

  7. 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

    2017-01-27

    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.

  8. Respiratory-related hospitalizations following prophylaxis in the Canadian registry for palivizumab (2005-2012) compared to other international registries.

    PubMed

    Paes, Bosco; Mitchell, Ian; Li, Abby; Harimoto, Tetsuhiro; 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.

  9. 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

  10. Weight loss intervention adherence and factors promoting adherence: a meta-analysis

    PubMed Central

    Lemstra, Mark; Bird, Yelena; Nwankwo, Chijioke; Rogers, Marla; Moraros, John

    2016-01-01

    Background Adhering to weight loss interventions is difficult for many people. The majority of those who are overweight or obese and attempt to lose weight are simply not successful. The objectives of this study were 1) to quantify overall adherence rates for various weight loss interventions and 2) to provide pooled estimates for factors associated with improved adherence to weight loss interventions. Methods We performed a systematic literature review and meta-analysis of all studies published between January 2004 and August 2015 that reviewed weight loss intervention adherence. Results After applying inclusion and exclusion criteria and checking the methodological quality, 27 studies were included in the meta-analysis. The overall adherence rate was 60.5% (95% confidence interval [CI] 53.6–67.2). The following three main variables were found to impact adherence: 1) supervised attendance programs had higher adherence rates than those with no supervision (rate ratio [RR] 1.65; 95% CI 1.54–1.77); 2) interventions that offered social support had higher adherence than those without social support (RR 1.29; 95% CI 1.24–1.34); and 3) dietary intervention alone had higher adherence than exercise programs alone (RR 1.27; 95% CI 1.19–1.35). Conclusion A substantial proportion of people do not adhere to weight loss interventions. Programs supervising attendance, offering social support, and focusing on dietary modification have better adherence than interventions not supervising attendance, not offering social support, and focusing exclusively on exercise. PMID:27574404

  11. 49 CFR 391.42 - Schedule for use of medical examiners listed on the National Registry of Certified Medical...

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... the National Registry of Certified Medical Examiners. 391.42 Section 391.42 Transportation Other... examiners listed on the National Registry of Certified Medical Examiners. On and after May 21, 2014, each... the National Registry of Certified Medical Examiners....

  12. 49 CFR 391.42 - Schedule for use of medical examiners listed on the National Registry of Certified Medical...

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... the National Registry of Certified Medical Examiners. 391.42 Section 391.42 Transportation Other... examiners listed on the National Registry of Certified Medical Examiners. On and after May 21, 2014, each... the National Registry of Certified Medical Examiners....

  13. 49 CFR 391.42 - Schedule for use of medical examiners listed on the National Registry of Certified Medical...

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... the National Registry of Certified Medical Examiners. 391.42 Section 391.42 Transportation Other... examiners listed on the National Registry of Certified Medical Examiners. On and after May 21, 2014, each... the National Registry of Certified Medical Examiners....

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

    NASA Technical Reports Server (NTRS)

    1993-01-01

    The Jan. 1993 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.

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Oct. 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.

  16. 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.

  17. Random registry shifts in quasi-one-dimensional adsorbate systems

    NASA Astrophysics Data System (ADS)

    Schäfer, J.; Erwin, S. C.; Hansmann, M.; Song, Z.; Rotenberg, E.; Kevan, S. D.; Hellberg, C. S.; Horn, K.

    2003-02-01

    The apparent contradiction of one-dimensional adsorbate chains on Si(111) having a 3×2 unit cell and yet a 3×1 diffraction pattern is resolved for the example of Ba/Si(111)-(3×2). Random registry shifts between adsorbate chains are observed in tunneling microscopy, with very short interchain correlation lengths. Fourier analysis provides a natural explanation for a pseudo-(3×1) diffraction pattern. Within density-functional theory such registry shifts can occur with essentially negligible energy cost, leading to entropy-driven, virtually perfect disorder. Substrate states of high symmetry and one-dimensional character are inferred to promote this phenomenon.

  18. National Adult Cardiac Surgery Registry: past, present and future.

    PubMed

    Uva, Miguel Sousa; Mota, João Carlos

    2003-10-01

    A task force commission was created with the support of the Portuguese Society for Cardiothoracic and Vascular Surgery with the aim of organizing a National Adult Cardiac Surgery Registry, collecting clinical data and types of cardiac surgical procedure performed in Portugal. Selected variables include risk factors, cardiac status, preoperative hemodynamics, surgical procedure, hospital stay and mortality. Information is collected into a database in each institution and sent via the internet to a central database responsible for grouping and data analysis. It is hoped that this National Registry, through standardized data collection, will provide information on cardiac surgery activity in Portugal and its risk adjusted results.

  19. Random registry shifts in quasi-one-dimensional adsorbate systems

    SciTech Connect

    Schafer, J.; Erwin, S.C.; Hansmann, M.; Song, Z.; Rotenberg, E.; Kevan, S.D.; Hellberg, C.S.; Horn, K.

    2003-02-18

    The apparent contradiction of one-dimensional adsorbate chains on Si(111) having a 3x2 unit cell and yet a 3x1 diffraction pattern is resolved for the example of Ba/Si(111)-(3x2). Random registry shifts between adsorbate chains are observed in tunneling microscopy, with very short interchain correlation lengths. Fourier analysis provides a natural explanation for a pseudo-(3x1) diffraction pattern. Within density-functional theory such registry shifts can occur with essentially negligible energy cost, leading to entropy-driven, virtually perfect disorder. Substrate states of high symmetry and one-dimensional character are inferred to promote this phenomenon.

  20. 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

  1. 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

  2. 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.

  3. UK Renal Registry 11th Annual Report (December 2008): Chapter 15 The UK Renal Registry, UKRR database, validation and methodology.

    PubMed

    Ansell, David; Tomson, Charles R V

    2009-01-01

    The UK Renal Registry receives encrypted data extracts quarterly from each centre providing Renal Replacement Therapy (RRT) in England, Wales and Northern Ireland. Summary data is received from the Scottish Renal Registry to allow national statistics to be compiled. Data from patients receiving haemodialysis in satellite units or at home are reported through the main renal centre. Data from patients with functioning kidney transplants are reported through the centre providing routine clinical follow-up. The data are extracted from a variety of IT systems with varying functionality and no common messaging system, necessitating extensive data validation and cleaning prior to analysis. Growing confidence in the analyses since the inception of the Registry in 1995 has allowed de-anonymised centre-specific analyses of all outcomes, including survival, to be published, although incomplete data returns for primary renal diagnosis and comorbidity at start of RRT limit ability to adjust for case-mix.

  4. Psychological perspective of medication adherence in transplantation

    PubMed Central

    De Pasquale, Concetta; Veroux, Massimiliano; Fornaro, Michele; Sinagra, Nunzia; Basile, Giusi; Gozzo, Cecilia; Santini, Roberta; Costa, Alessandra; Pistorio, Maria Luisa

    2016-01-01

    AIM To identify the risk factors and the post-transplant psychological symptoms that affect adherence to therapy in a population of kidney transplant recipients. METHODS The study examined the psychological variables likely responsible for the non-adherent behavior using a psychological-psychiatric assessment, evaluation of the perception of patients’ health status, and an interview regarding the anti-rejection drug therapy assumption. The study included 74 kidney transplant recipients. RESULTS Individuals with a higher level of education and more years since transplantation showed better mental balance. Regarding gender, women appeared to be less adherent to therapy. Further, the years since transplantation adversely affected the proper pharmacological assumption. Adherence to therapy did not significantly change with the mental health index. CONCLUSION The biopsychosocial illness model provides a conceptual frame of reference in which biological, psychological, and social aspects take on the same importance in the adherence to treatment protocols. For effective management, it is necessary to understand the patients’ personal experiences, their assumptions about the disease, health status perception, and mood, and to identify any “barriers” that could cause them to become noncompliant. PMID:28058225

  5. Adherence to Glycemic Monitoring in Diabetes

    PubMed Central

    Patton, Susana R.

    2015-01-01

    Glucose monitoring either by self-monitoring of blood glucose (SMBG) or continuous glucose monitoring (CGM) plays an important role in diabetes management and in reducing risk for diabetes-related complications. However, despite evidence supporting the role of glucose monitoring in better patient health outcomes, studies also reveal relatively poor adherence rates to SMBG and CGM use and numerous patient-reported barriers. Fortunately, some promising intervention strategies have been identified that promote at least short-term improvements in patients’ adherence to SMBG. These include education, problem solving, contingency management, goal setting, cognitive behavioral therapy, and motivational interviewing. Specific to CGM, interventions to promote greater use among patients are currently under way, yet one pilot study provides data suggesting better maintenance of CGM use in patients showing greater readiness for behavior change. The purpose of this review is to summarize the literature specific to glucose monitoring in patients with diabetes focusing specifically on current adherence rates, barriers to monitoring, and promising intervention strategies that may be ready to deploy now in the clinic setting to promote greater patient adherence to glucose monitoring. Yet, to continue to help patients with diabetes adhere to glucose monitoring, future research is needed to identify the treatment strategies and the intervention schedules that most likely lead to long-term maintenance of optimal glycemic monitoring levels. PMID:25591853

  6. 76 FR 57742 - National Registry of Evidence-Based Programs and Practices

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-09-16

    ... HUMAN SERVICES National Registry of Evidence-Based Programs and Practices AGENCY: Substance Abuse and Mental Health Services Administration, HHS. ACTION: Notice Regarding Substance Abuse and Mental Health Services Administration's National Registry of Evidence-based Programs and Practices (NREPP):...

  7. 77 FR 2126 - Pipeline Safety: Implementation of the National Registry of Pipeline and Liquefied Natural Gas...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-01-13

    ... Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and Hazardous Materials Safety... registry of pipeline and liquefied natural gas operators. FOR FURTHER INFORMATION CONTACT: Jamerson Pender... 72878), titled: ``Pipeline Safety: Updates to Pipeline and Liquefied Natural Gas Reporting...

  8. Bipolar disorder: medication adherence and life contentment.

    PubMed

    Darling, Carol Anderson; Olmstead, Spencer B; Lund, Victoria E; Fairclough, Jaime F

    2008-06-01

    Using family stress theory, we examined the influence of family and health stress, level of coping, and internal health locus of control upon the life contentment of individuals diagnosed with bipolar disorder (BPD) who were either adherent or nonadherent to their medication regimens. A survey-interview design was used with a sample of 100 individuals diagnosed with BPD; 50 participants were adherent to their medication and 50 were considered nonadherent. The results indicated that the adherent group had fewer health problems and more resources for coping with stress, possessed a stronger belief that their own behaviors controlled their health status, and had higher life contentment compared to nonadherent participants. For the participants in this study, internal health locus of control had the greatest total effect on life contentment followed by family coping. Implications included the need to comprehensively assess each individual regarding the multiple factors in one's life that influence an effective treatment regimen.

  9. 78 FR 19400 - Registry for Attorneys and Representatives

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-04-01

    ... applicant to present photo identification in person, so that the applicant's identity can be validated. EOIR... online.\\13\\ EOIR's requirement that applicants present photo identification in person will provide EOIR... a registry applicant validate his or her identity by presenting photo identification as a final...

  10. Implementation and analysis of initial trauma registry in Iquitos, Peru

    PubMed Central

    Duron, Vincent; DeUgarte, Daniel; Bliss, David; Salazar, Ernesto; Casapia, Martin; Ford, Henri; Upperman, Jeffrey

    2016-01-01

    Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%), motor vehicle collisions (23.3%), and blunt assault (10.5%). Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001) and oxygen saturation (26 to 92%, P < 0.001) documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos. PMID:27766233

  11. 76 FR 14366 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-16

    ... Certified Medical Examiners AGENCY: Federal Motor Carrier Safety Administration, Transportation. ACTION... National Registry of Certified Medical Examiners (NRCME) published on December 1, 2008. In the comments on the NPRM, a commenter inquired as to what a motor carrier had to do to verify that a medical...

  12. Update on the NAS-NRC Twin Registry.

    PubMed

    Page, William F

    2006-12-01

    The National Academy of Sciences-National Research Council (NAS-NRC) Twin Registry is one of the oldest, national population-based twin registries in the United States. It consists of 15,924 white male twin pairs born in the years 1917 to 1927 (inclusive), both of whom served in the armed forces, mostly during World War II. This article updates activity in this registry since the earlier 2002 article in Twin Research. The results of clinically based studies on dementia, Parkinson's disease, age-related macular degeneration, and primary osteoarthritis were published, as well as articles based on previously collected questionnaire data on chronic fatigue syndrome, functional limitations, and healthy aging. In addition, risk factor studies are being planned to merge clinical data with earlier collected risk factor data from questionnaires. Examination data from the subset of National Heart, Lung, and Blood Institute (NHLBI) twins resulted in a number of articles, including the relationship of endogenous sex hormones to coronary heart disease and morphological changes in aging brain structures. The NEO Five-Factor Personality Inventory (a paper-and-pencil self-administered questionnaire) has been fielded for the first time. A push to consolidate the various data holdings of the registry is being made.

  13. Chemical Abstracts Service Chemical Registry System: History, Scope, and Impacts.

    ERIC Educational Resources Information Center

    Weisgerber, David W.

    1997-01-01

    Describes the history, scope, and applications of the Chemical Abstracts Service Chemical Registry System, a computerized database that uniquely identifies chemical substances on the basis of their molecular structures. Explains searching the system is and discusses its use as an international resource. (66 references) (Author/LRW)

  14. Process produces accurate registry between circuit board prints

    NASA Technical Reports Server (NTRS)

    1966-01-01

    Tapes and quick-mount circles of contrasting colors aid in obtaining precise registry between the two circuits of two-sided printed circuit boards. The tapes and circles are mounted on opposite sides of transparent plastic film to define the conductive path and feed-through hole locations.

  15. Toxic Substances Registry System Index of Material Safety Data Sheets

    NASA Technical Reports Server (NTRS)

    1997-01-01

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

  16. hPSCreg--the human pluripotent stem cell registry.

    PubMed

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-04

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application.

  17. hPSCreg—the human pluripotent stem cell registry

    PubMed Central

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  18. Inception of an Australian spine trauma registry: the minimum dataset.

    PubMed

    Tee, J W; Chan, C H P; Gruen, R L; Fitzgerald, M C B; Liew, S M; Cameron, P A; Rosenfeld, J V

    2012-06-01

    Background The establishment of a spine trauma registry collecting both spine column and spinal cord data should improve the evidential basis for clinical decisions. This is a report on the pilot of a spine trauma registry including development of a minimum dataset. Methods A minimum dataset consisting of 56 data items was created using the modified Delphi technique. A pilot study was performed on 104 consecutive spine trauma patients recruited by the Victorian Orthopaedic Trauma Outcomes Registry (VOTOR). Data analysis and collection methodology were reviewed to determine its feasibility. Results Minimum dataset collection aided by a dataset dictionary was uncomplicated (average of 5 minutes per patient). Data analysis revealed three significant findings: (1) a peak in the 40 to 60 years age group; (2) premorbid functional independence in the majority of patients; and (3) significant proportion being on antiplatelet or anticoagulation medications. Of the 141 traumatic spine fractures, the thoracolumbar segment was the most frequent site of injury. Most were neurologically intact (89%). Our study group had satisfactory 6-month patient-reported outcomes. Conclusion The minimum dataset had high completion rates, was practical and feasible to collect. This pilot study is the basis for the development of a spine trauma registry at the Level 1 trauma center.

  19. Regional Cancer Registries – 20 Years and Growing

    Cancer.gov

    The NCI, Center for Global Health (CGH), the University of California at Irvine, the Middle East Cancer Consortium, and the International Agency for Research on Cancer partnered in support of the training course, held in Ankara, Turkey this past October, on The Uses of Cancer Registry Data in Cancer Control Research.

  20. Cell Phone Intervention to Improve Adherence

    PubMed Central

    Marciel, Kristen K.; Saiman, Lisa; Quittell, Lynne M.; Dawkins, Kevin; Quittner, Alexandra L.

    2010-01-01

    Summary Background Treatment regimens for patients with cystic fibrosis (CF) are time-consuming and complex, resulting in consistently low adherence rates. To date, few studies have evaluated innovative technologies to improve adherence in this population. Current infection control guidelines for patients with CF seek to minimize patient-to-patient transmission of potential pathogens. Thus, interventions must avoid face-to-face contact and be delivered individually, limiting opportunities for peer support. This study aimed to develop and assess a web-enabled cell phone, CFFONE™, designed to provide CF information and social support to improve adherence in adolescents with CF. Methods The acceptability, feasibility, and utility of CFFONE™ were evaluated with health care professionals (n = 17) adolescents with CF aged 11–18 years old (n = 12), adults with CF aged 21–36 years old (n = 6), parents of adolescents with CF (n = 12), and technology experts (n = 8). Adolescents also tested a prototype of CFFONE™ (n = 9). Qualitative and quantitative data were collected. Results Focus group data with health care = professionals indicated a need for this intervention, and indicated that CFFONE™ would be likely to improve knowledge and social support, and somewhat likely to improve adherence. Adolescent, adults, and parents all rated CFFONE™ as likely to improve adherence. Technology experts rated the prototype design and format as appropriate. Conclusions The current study provided some support from key stakeholders for this intervention to improve adherence in adolescents with CF. Next steps include a multi-center trial of the efficacy and safety of CFFONE™. PMID:20054860

  1. A Review of Treatment Adherence Measurement Methods

    PubMed Central

    Schoenwald, Sonja K.; Garland, Ann F.

    2013-01-01

    Fidelity measurement is critical for testing the effectiveness and implementation in practice of psychosocial interventions. Adherence is a critical component of fidelity. The purposes of this review were to catalogue adherence measurement methods and assess existing evidence for the valid and reliable use of scores they generate and feasibility of use in routine care settings. Method A systematic literature search identified articles published between 1980–2008 reporting studies of evidence-based psychosocial treatments for child or adult mental health problems, and including mention of adherence or fidelity assessment. Coders abstracted data on the measurement methods and clinical contexts of their use. Results 341 articles were reviewed in which 249 unique adherence measurement methods were identified. These methods assessed many treatment models, although more than half (59%) assessed Cognitive Behavioral Treatments. The measurement methods were used in studies with diverse clientele and clinicians. The majority (71.5%) of methods were observational. Information about psychometric properties was reported for 35% of the measurement methods, but adherence-outcomes relationships were reported for only ten percent. Approximately one third of the measures were used in community- based settings. Conclusions Many adherence measurement methods have been used in treatment research; however, little reliability and validity evidence exists for the use of these methods. That some methods were used in routine care settings suggests the feasibility of their use in practice; however, information about the operational details of measurement, scoring, and reporting is sorely needed to inform and evaluate strategies to embed fidelity measurement in implementation support and monitoring systems. PMID:22888981

  2. The Emerging Role of Adoption Reunion Registries: Adoptee and Birthparent Views.

    ERIC Educational Resources Information Center

    Fischer, Robert L.

    2002-01-01

    The State of Georgia Adoption Reunion Registry assists adoptees in searching for birthparents and biological siblings, and provides referral to support services. Responses to a mail-in survey of 45 adoptees and 46 birthparents, all users of the Georgia registry, indicated high levels of satisfaction with the registry's services. Birthparents…

  3. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-05

    ... Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity: Comment Request...@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self... forms of information technology. Title: Open Burn Pit Registry Airborne Hazard...

  4. 14 CFR 49.63 - Eligibility for Authorization for Transmission to the International Registry: general requirements.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Transmission to the International Registry: general requirements. 49.63 Section 49.63 Aeronautics and Space... SECURITY DOCUMENTS Transmission of Information to the International Registry § 49.63 Eligibility for Authorization for Transmission to the International Registry: general requirements. (a) To send information...

  5. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS... Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... National Do Not Call Registry maintained by the Commission under § 310.4(b)(1)(iii)(B); provided,...

  6. 28 CFR 51.32 - Establishment and maintenance of registry of interested individuals and groups.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 28 Judicial Administration 2 2012-07-01 2012-07-01 false Establishment and maintenance of registry... AMENDED Communications From Individuals and Groups § 51.32 Establishment and maintenance of registry of interested individuals and groups. The Attorney General shall establish and maintain a Registry of...

  7. 14 CFR 91.713 - Operation of civil aircraft of Cuban registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... registry. 91.713 Section 91.713 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Rules Governing Persons on Board Such Aircraft § 91.713 Operation of civil aircraft of Cuban registry. No person may operate a civil aircraft of Cuban registry except in controlled airspace and...

  8. 27 CFR 29.55 - Registry of stills and distilling apparatus.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry of stills and... Registry of stills and distilling apparatus. (a) General. Every person having possession, custody, or... regarded as set up and subject to registry when it is in position over a furnace, or connected with...

  9. 49 CFR 390.115 - Procedure for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 5 2012-10-01 2012-10-01 false Procedure for removal from the National Registry... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.115 Procedure for removal from the National Registry of Certified...

  10. 49 CFR 390.115 - Procedure for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 5 2014-10-01 2014-10-01 false Procedure for removal from the National Registry... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.115 Procedure for removal from the National Registry of Certified...

  11. 14 CFR 91.713 - Operation of civil aircraft of Cuban registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... registry. 91.713 Section 91.713 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Rules Governing Persons on Board Such Aircraft § 91.713 Operation of civil aircraft of Cuban registry. No person may operate a civil aircraft of Cuban registry except in controlled airspace and...

  12. 47 CFR 64.1202 - Public safety answering point do-not-call registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... registry. 64.1202 Section 64.1202 Telecommunication FEDERAL COMMUNICATIONS COMMISSION (CONTINUED) COMMON... registry. (a) As used in this section, the following terms are defined as: (1) Operators of automatic... required to file a certification with the administrator of the PSAP registry, under penalty of law,...

  13. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS... Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... National Do Not Call Registry maintained by the Commission under § 310.4(b)(1)(iii)(B); provided,...

  14. 46 CFR 67.55 - Requirement for removal from foreign registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 46 Shipping 2 2010-10-01 2010-10-01 false Requirement for removal from foreign registry. 67.55... Requirement for removal from foreign registry. The owner of a vessel must present evidence of removal of the vessel from foreign registry whenever: (a) The owner applies for initial documentation of a vessel...

  15. 49 CFR 390.115 - Procedure for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 5 2013-10-01 2013-10-01 false Procedure for removal from the National Registry... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.115 Procedure for removal from the National Registry of Certified...

  16. 14 CFR 49.63 - Eligibility for Authorization for Transmission to the International Registry: general requirements.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... Transmission to the International Registry: general requirements. 49.63 Section 49.63 Aeronautics and Space... SECURITY DOCUMENTS Transmission of Information to the International Registry § 49.63 Eligibility for Authorization for Transmission to the International Registry: general requirements. (a) To send information...

  17. 49 CFR 390.113 - Reasons for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 5 2013-10-01 2013-10-01 false Reasons for removal from the National Registry of... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.113 Reasons for removal from the National Registry of Certified...

  18. 46 CFR 67.55 - Requirement for removal from foreign registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 46 Shipping 2 2013-10-01 2013-10-01 false Requirement for removal from foreign registry. 67.55... Requirement for removal from foreign registry. The owner of a vessel must present evidence of removal of the vessel from foreign registry whenever: (a) The owner applies for initial documentation of a vessel...

  19. 49 CFR 390.113 - Reasons for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 5 2014-10-01 2014-10-01 false Reasons for removal from the National Registry of... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.113 Reasons for removal from the National Registry of Certified...

  20. 46 CFR 67.55 - Requirement for removal from foreign registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 46 Shipping 2 2014-10-01 2014-10-01 false Requirement for removal from foreign registry. 67.55... Requirement for removal from foreign registry. The owner of a vessel must present evidence of removal of the vessel from foreign registry whenever: (a) The owner applies for initial documentation of a vessel...

  1. 47 CFR 64.1202 - Public safety answering point do-not-call registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... registry. 64.1202 Section 64.1202 Telecommunication FEDERAL COMMUNICATIONS COMMISSION (CONTINUED) COMMON... registry. (a) As used in this section, the following terms are defined as: (1) Operators of automatic... required to file a certification with the administrator of the PSAP registry, under penalty of law,...

  2. 14 CFR 49.63 - Eligibility for Authorization for Transmission to the International Registry: general requirements.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... Transmission to the International Registry: general requirements. 49.63 Section 49.63 Aeronautics and Space... SECURITY DOCUMENTS Transmission of Information to the International Registry § 49.63 Eligibility for Authorization for Transmission to the International Registry: general requirements. (a) To send information...

  3. 46 CFR 67.55 - Requirement for removal from foreign registry.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 46 Shipping 2 2012-10-01 2012-10-01 false Requirement for removal from foreign registry. 67.55... Requirement for removal from foreign registry. The owner of a vessel must present evidence of removal of the vessel from foreign registry whenever: (a) The owner applies for initial documentation of a vessel...

  4. 46 CFR 67.55 - Requirement for removal from foreign registry.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 46 Shipping 2 2011-10-01 2011-10-01 false Requirement for removal from foreign registry. 67.55... Requirement for removal from foreign registry. The owner of a vessel must present evidence of removal of the vessel from foreign registry whenever: (a) The owner applies for initial documentation of a vessel...

  5. 14 CFR 49.63 - Eligibility for Authorization for Transmission to the International Registry: general requirements.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... Transmission to the International Registry: general requirements. 49.63 Section 49.63 Aeronautics and Space... SECURITY DOCUMENTS Transmission of Information to the International Registry § 49.63 Eligibility for Authorization for Transmission to the International Registry: general requirements. (a) To send information...

  6. 14 CFR 49.63 - Eligibility for Authorization for Transmission to the International Registry: general requirements.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... Transmission to the International Registry: general requirements. 49.63 Section 49.63 Aeronautics and Space... SECURITY DOCUMENTS Transmission of Information to the International Registry § 49.63 Eligibility for Authorization for Transmission to the International Registry: general requirements. (a) To send information...

  7. 28 CFR 51.32 - Establishment and maintenance of registry of interested individuals and groups.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 28 Judicial Administration 2 2014-07-01 2014-07-01 false Establishment and maintenance of registry... AMENDED Communications From Individuals and Groups § 51.32 Establishment and maintenance of registry of interested individuals and groups. The Attorney General shall establish and maintain a Registry of...

  8. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS... Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... National Do Not Call Registry maintained by the Commission under § 310.4(b)(1)(iii)(B); provided,...

  9. 28 CFR 51.32 - Establishment and maintenance of registry of interested individuals and groups.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 28 Judicial Administration 2 2013-07-01 2013-07-01 false Establishment and maintenance of registry... AMENDED Communications From Individuals and Groups § 51.32 Establishment and maintenance of registry of interested individuals and groups. The Attorney General shall establish and maintain a Registry of...

  10. 24 CFR 3400.205 - HUD's establishment of nationwide mortgage licensing system and registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... mortgage licensing system and registry. 3400.205 Section 3400.205 Housing and Urban Development Regulations... Originator Licensing System and Nationwide Mortgage Licensing and Registry System § 3400.205 HUD's establishment of nationwide mortgage licensing system and registry. If HUD determines that the NMLSR...

  11. 14 CFR 91.713 - Operation of civil aircraft of Cuban registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... registry. 91.713 Section 91.713 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Rules Governing Persons on Board Such Aircraft § 91.713 Operation of civil aircraft of Cuban registry. No person may operate a civil aircraft of Cuban registry except in controlled airspace and...

  12. 14 CFR 91.713 - Operation of civil aircraft of Cuban registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... registry. 91.713 Section 91.713 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Rules Governing Persons on Board Such Aircraft § 91.713 Operation of civil aircraft of Cuban registry. No person may operate a civil aircraft of Cuban registry except in controlled airspace and...

  13. 78 FR 54956 - Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-09-06

    ... AFFAIRS Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment....rennie@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.'' SUPPLEMENTARY INFORMATION: Title: Open Burn Pit Registry Airborne Hazard...

  14. 24 CFR 3400.205 - HUD's establishment of nationwide mortgage licensing system and registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... mortgage licensing system and registry. 3400.205 Section 3400.205 Housing and Urban Development Regulations... Originator Licensing System and Nationwide Mortgage Licensing and Registry System § 3400.205 HUD's establishment of nationwide mortgage licensing system and registry. If HUD determines that the NMLSR...

  15. 24 CFR 3400.205 - HUD's establishment of nationwide mortgage licensing system and registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... mortgage licensing system and registry. 3400.205 Section 3400.205 Housing and Urban Development Regulations... Originator Licensing System and Nationwide Mortgage Licensing and Registry System § 3400.205 HUD's establishment of nationwide mortgage licensing system and registry. If HUD determines that the NMLSR...

  16. 14 CFR 91.713 - Operation of civil aircraft of Cuban registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... registry. 91.713 Section 91.713 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... Rules Governing Persons on Board Such Aircraft § 91.713 Operation of civil aircraft of Cuban registry. No person may operate a civil aircraft of Cuban registry except in controlled airspace and...

  17. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS... Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... National Do Not Call Registry maintained by the Commission under § 310.4(b)(1)(iii)(B); provided,...

  18. 75 FR 68604 - National Saltwater Angler Registry Program Designation of Exempted States

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-11-08

    ... National Oceanic and Atmospheric Administration RIN 0648-XZ91 National Saltwater Angler Registry Program... INFORMATION: The final rule implementing the National Saltwater Angler Registry Program, 50 CFR Subpart P, was... under a qualifying state license and/or registry program, or to provide catch and effort data from...

  19. 27 CFR 29.55 - Registry of stills and distilling apparatus.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry of stills and... Registry of stills and distilling apparatus. (a) General. Every person having possession, custody, or... regarded as set up and subject to registry when it is in position over a furnace, or connected with...

  20. 75 FR 53953 - The National Saltwater Angler Registry Program; Designation of Exempted States for Anglers, Spear...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-09-02

    ... National Oceanic and Atmospheric Administration RIN 0648-XX66 The National Saltwater Angler Registry... Registry Program, 50 CFR subpart P, was published in the Federal Register on December 30, 2008. The final... numbers of the persons licensed or registered under a qualifying state license and/or registry program,...

  1. 49 CFR 390.113 - Reasons for removal from the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 5 2012-10-01 2012-10-01 false Reasons for removal from the National Registry of... MOTOR CARRIER SAFETY REGULATIONS FEDERAL MOTOR CARRIER SAFETY REGULATIONS; GENERAL National Registry of Certified Medical Examiners § 390.113 Reasons for removal from the National Registry of Certified...

  2. 27 CFR 29.55 - Registry of stills and distilling apparatus.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry of stills and... Registry of stills and distilling apparatus. (a) General. Every person having possession, custody, or... regarded as set up and subject to registry when it is in position over a furnace, or connected with...

  3. 28 CFR 51.32 - Establishment and maintenance of registry of interested individuals and groups.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 28 Judicial Administration 2 2011-07-01 2011-07-01 false Establishment and maintenance of registry... AMENDED Communications From Individuals and Groups § 51.32 Establishment and maintenance of registry of interested individuals and groups. The Attorney General shall establish and maintain a Registry of...

  4. 77 FR 16471 - Pipeline Safety: Implementation of the National Registry of Pipeline and Liquefied Natural Gas...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-21

    ...: Implementation of the National Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and... registry of pipeline and liquefied natural gas operators. This notice provides updates to the information... and liquefied natural gas (LNG) operators. New operators use the national registry to obtain...

  5. The Euro-VO Registry, Re-engineering the Back-end

    NASA Astrophysics Data System (ADS)

    Arviset, C.; Perdikeas, M.; Osuna, P.; Gonzalez, J.

    2015-09-01

    The Euro-VO Registry, located, developed and operated at ESAC, is one of the full searchable registries available worldwide, gathering information about all VO-compliant resources. The Euro-VO Registry serves as a registration point for European - and other countries- VO actors and data centres wishing to publish VO services. It harvests other registries to ensure its completeness so VO applications developers and VO users can use it to discover all VO resources, from Europe and from all other VO projects. The Euro-VO Registry provides as well a harvesting interface to other registries in the world to make sure the European VO services are also included in all other worldwide full registries. In particular, the new Euro-VO registry will be supporting the new RegTAP search interface for the relational registry allowing arbitrary ADQL queries against its contents over a compliant TAP service. The recently obsolete (for future developments) SOAP-based legacy search interface will also be supported for backwards compatibility purposes. Furthermore, in the context of the IVOA, some quality control and curation procedures for the registry resources are being defined. The Euro-VO Registry implements these procedures to ensure the high quality of the VO resources it references. This paper gives an overview of the recent development of the new Euro-VO Registry, together with its new curation facilities, both of which are being performed under a contract awarded to Neuropublic, under ESA special initiative to Greece.

  6. 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…

  7. 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

  8. Rapid Deployment Aortic Replacement (RADAR) Registry in Spain: a protocol

    PubMed Central

    Cal-Purriños, Natalia; Arribas-Leal, Jose M; Carnero-Alcazar, Manuel; Gutierrez-Diez, Jose F; Cuenca-Castillo, Jose J

    2017-01-01

    Introduction Rapid deployment valves (RDV) represent a newly introduced approach to aortic valve replacement which facilitates surgical implantation and minimally invasive techniques, shortens surgical times and shows excellent haemodynamic performance. However, evidence on their safety, efficacy and potential complications is mostly fitted with small-volume and retrospective studies. Moreover, no current guidelines exist. To improve our knowledge on this technology, The Rapid Deployment Aortic Replacement (RADAR) Registry will be established across Spain with the aim of assessing RDV outcomes in the real-world setting. Methods and analysis The RADAR Registry is designed as a product registry that would provide information on its use and outcomes in clinical practice. This multicentre, prospective, national effort will initially involve 4 centres in Spain. Any patient undergoing cardiac surgery for aortic valve replacement and receiving an RDV as an isolated operation or in combination with other cardiac procedures may be included. Participation is voluntary. Data collection is equal to information obtained during standard care and is prospectively entered by the participating physicians perioperatively and during subsequent follow-up visits. The primary outcome assessed is in-hospital and up to 5 years of follow-up, prosthetic valve functioning and clinical status. Secondary outcomes are to perform subgroup analysis, to compare outcomes with other existing approaches and to develop future clinical guidelines. The follow-up assessments are timed with routine clinical appointments. Dissociated data will be extracted and collectively analysed. Initial target sample size for the registry is 500 participants entered with complete follow-up information. Different substudies will be implemented within the registry to investigate specific populations undergoing aortic valve replacement. Ethics and dissemination The protocol is approved by all local institutional ethics

  9. Validation of a Perfusion Registry: Methodological Approach and Initial Findings

    PubMed Central

    Paugh, Theron A.; Dickinson, Timothy A.; Theurer, Patricia F.; Bell, Gail F.; Shann, Kenneth G.; Baker, Robert A.; Mellas, Nicholas B.; Prager, Richard L.; Likosky, Donald S.

    2012-01-01

    Abstract: Although regional and national registries exist to measure and report performance of cardiac surgical programs, few registries exist dedicated to the practice of cardiopulmonary bypass (CPB). We developed and implemented a cardiovascular perfusion registry (Perfusion Measures and outcomes [PERForm] Registry) within the structure of the Michigan Society of Thoracic and Cardiovascular Surgeons (MSTCVS) to improve our understanding of the practice of CPB. The PERForm Registry comprises data elements describing the practice of CPB. Fourteen medical centers within MSTCVS have voluntarily reported these data on procedures in which CPB is used. We validated the case count among procedures performed between January 1, 2011 to December 31, 2011, and validated the values among 20 fields at three medical centers. We queried database managers at all 14 medical centers to identify the infrastructure that contributed to best overall data collection performance. We found that 98% of all records submitted to the PERForm and 95% of those submitted to the Society of Thoracic Surgeons (STS) matched. We found quite favorable agreement in our audit of select fields (95.8%). Those centers with the most favorable performance in this validation study were more likely to use electronic data capture, have a perfusionist as the STS database manager, and have involvement of the STS database manager in the PERForm or STS databases. We successfully and accurately collected data concerning cardiovascular perfusion among 14 institutions in conjunction with the MSTCVS. Future efforts will focus on expanding data collection to all MSTCVS participating institutions as well as more broadly outside of Michigan. PMID:23198390

  10. 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.

  11. 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.

  12. Differences in Baseline Characteristics and Outcomes at One-and Two-Year Follow-up of Cancer Survivors Accrued via Self-Referral versus Cancer Registry in the FRESH START Diet and Exercise Trial

    PubMed Central

    Snyder, Denise Clutter; Sloane, Richard; Lobach, David; Lipkus, Isaac M.; Peterson, Bercedis; Kraus, William; Demark-Wahnefried, Wendy

    2013-01-01

    Participant accrual to research studies is a challenge, and oftentimes advertisements are used to supplement cases ascertained through clinic caseloads and cancer registries. It is unknown however, if cases ascertained through these two sources differ. In this study, we compare self-referred (n=209) versus cancer registry-ascertained participants (n=334) enrolled in FRESH START, a randomized controlled trial promoting a healthy diet and increased exercise among breast and prostate cancer survivors. The two groups were compared on baseline characteristics, adherence, attrition, and outcomes by study arm. Compared to participants enrolled from registries, self-referrals were significantly younger (54.1±10.4 vs. 58.7±10.7 years), more likely to have later-staged disease and to have received chemotherapy (40% vs. 19%), and more likely to report “fighting spirit” coping styles (50% vs. 30%), lower quality-of-life (88.2+15.1 vs. 92.0+12.9), fewer co-morbid conditions (1.87±1.60 vs. 2.24±1.78), and lower consumption of 5 or more daily servings of fruits and vegetables (35% vs. 45%)(p-values <.05). While no differences in behavior change were observed between self-referred and registry-ascertained cases assigned to the tailored intervention arm, this was not the case within the attention control arm. Among those who received the attention control intervention of standardized materials in the public domain, self-referred versus registry-ascertained participants demonstrated significantly greater increases in exercise at 1-year follow-up, and significantly greater increases in fruit and vegetable consumption at both 1- and 2-year follow-up (p-values <.05). Several differences exist between self-referred versus registry-ascertained participants, including motivation to respond to standardized educational materials which appears significantly greater in self-referred populations. PMID:18483353

  13. Adherence to Cardiovascular Medications: Lessons Learned and Future Directions

    PubMed Central

    Kronish, Ian M; Ye, Siqin

    2013-01-01

    Approximately 50% of patients with cardiovascular disease and/or its major risk factors have poor adherence to their prescribed medications. Finding novel methods to help patients improve their adherence to existing evidence-based cardiovascular drug therapies has enormous potential to improve health outcomes while potentially reducing health care costs. The goal of this report is to provide a review of the current understanding of adherence to cardiovascular medications from the point of view of prescribing clinicians and cardiovascular researchers. Key topics addressed include: 1) definitions of medication adherence; 2) prevalence and impact of non-adherence; 3) methods for assessing medication adherence; 4) reasons for poor adherence; and 5) approaches to improving adherence to cardiovascular medications. For each of these topics, the report seeks to identify important gaps in knowledge and opportunities for advancing the field of cardiovascular adherence research. PMID:23621969

  14. The Multiple Continuum Components in the White-Light Flare of 16 January 2009 on the dM4.5e Star YZ CMi

    NASA Astrophysics Data System (ADS)

    Kowalski, A. F.; Hawley, S. L.; Holtzman, J. A.; Wisniewski, J. P.; Hilton, E. J.

    2012-03-01

    The white light during M dwarf flares has long been known to exhibit the broadband shape of a T≈10 000 K blackbody, and the white light in solar-flares is thought to arise primarily from hydrogen recombination. Yet, a current lack of broad-wavelength coverage solar flare spectra in the optical/near-UV region prohibits a direct comparison of the continuum properties to determine if they are indeed so different. New spectroscopic observations of a secondary flare during the decay of a megaflare on the dM4.5e star YZ CMi have revealed multiple components in the white-light continuum of stellar flares, including both a blackbody-like spectrum and a hydrogen-recombination spectrum. One of the most surprising findings is that these two components are anti-correlated in their temporal evolution. We combine initial phenomenological modeling of the continuum components with spectra from radiative hydrodynamic models to show that continuum veiling causes the measured anti-correlation. This modeling allows us to use the components' inferred properties to predict how a similar spatially resolved, multiple-component, white-light continuum might appear using analogies to several solar-flare phenomena. We also compare the properties of the optical stellar flare white light to Ellerman bombs on the Sun.

  15. Adherence discourse among African-American women taking HAART

    PubMed Central

    Sankar, A.; Luborsky, M.; Schuman, P.; Roberts, G.

    2014-01-01

    Low adherence is the single most important challenge to controlling HIV through the use of high acting anti-retrovirals (HAART). Non-adherence poses an immediate threat to individuals who develop resistant forms of the virus as well as a public health threat if those individuals pass on treatment-resistant forms of the virus. To understand the concerns and perceptions that promote or deter adherence to antiretroviral medication by HIV-positive African-American women, we conducted in-depth interviews with 15 African-American women taking HAART. We focused on the discourse and narratives women use in talking about their adherence practice. Discourse analysis was utilized to identify and explore the sources of influence used by these women in describing their adherence practice. Roughly a third of the sample fell into each of the three self-assessed adherence categories: always adherent, mostly adherent and somewhat adherent. Among the ‘always adherent’, 80% of the sources of influence cited supported adherence, while only 48% and 47% of the authoritative sources cited by women in the ‘mostly’ and ‘somewhat’ categories supported adherence. Each self-assessed adherence group was characterized by its own distinctive discourse style. Findings suggest that adherence to HAART among African-American HIV-positive women would be improved by identifying those influences undermining adherence. Focused study of the ‘always adherent’ types is recommended. PMID:11940279

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

    PubMed

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

    2015-06-01

    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.

  17. Medication Adherence Pattern and Factors affecting Adherence in Helicobacter Pylori Eradication Therapy.

    PubMed

    Shakya Shrestha, S; Bhandari, M; Thapa, S R; Shrestha, R; Poudyal, R; Purbey, B; Gurung, R B

    2016-01-01

    Background Helicobacter pylori (H. pylori) infection is the most common chronic bacterial infection worldwide affecting approximately half of the world's population. A number of screening tests as well as complex multi-drug therapies are available for the detection and treatment of H. pylori infection. However, the optimum eradication rates of H. pylori infection can only be achieved if adherence to drug therapy is higher. Therefore, it is of utmost importance to determine the factors leading to poor adherence to obtain successful treatment outcomes. Objective To determine the medication adherence pattern in patients with H. pylori infection and assess the factors associated with non-adherence to the prescribed drug therapy. Method Patients meeting the inclusion criteria who were confirmed as H. pylori positive by rapid urease test (histopathology) and/ or stool antigen test and those under H. pylori eradication therapy were considered. Informed consent was taken from the patients or from the patient party in incapacitated patients. They were then interviewed using structured questionnaire. Statistical analysis was done using SPSS version 20 and a p-value < 0.05 was considered as statistically significant. Result Among the 70 participants included in this study, 57.10% (n=40) of them were males. The mean (±SD) age of the patients was 42.36 years (±17.93). Higher number (85.70% (n=60)) of the patients were adherent to the recommended medication. Forgetfulness was the reason for missing dose in a majority (80% (n=8)) of the nonadherent patients. A highly significant association (p<0.05) was observed between adherence and absence of symptomatic relief. However, there was no statistically significant association (p>0.05) between patients' adherence to gender, age, literacy, and the prescribed treatment regimen. Conclusion Majority of the patients with H. pylori infection were adherent to medication. Forgetfulness was the major reason for missing dose in the non-adherent

  18. Adherence to Exercise and Physical Activity: Preface.

    ERIC Educational Resources Information Center

    Morgan, William P.; Dishman, Rod K.

    2001-01-01

    Introduces a collection of papers on adherence to exercise programs and physical activity from the 2000 American Academy of Kinesiology and Physical Education conference, which included research on middle school boys and girls, college men and women, and men and women in the later years, as well as on the more traditional subject of middle aged…

  19. Adherence to Sports-Injury Rehabilitation Programs.

    ERIC Educational Resources Information Center

    Fisher, A. Craig; And Others

    1988-01-01

    Analysis of 41 injured college athletes' responses to a questionnaire revealed that those athletes who adhered to their rehabilitation program were more self-motivated, tolerated pain better, perceived that they worked harder at their rehabilitation, and were less bothered by scheduling of sessions and athletic training environmental conditions.…

  20. E-health strategies to support adherence

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Adherence to healthy behaviors and self-care strategies is a concern among clinicians. E-health applications, such as the internet, personal communication devices, electronic health records and web portals, and electronic games, may be a way to provide health information in a way that is reliable, c...

  1. Funhaler spacer: improving adherence without compromising delivery

    PubMed Central

    Watt, P; Clements, B; Devadason, S; Chaney, G

    2003-01-01

    A novel asthma spacer device, the "Funhaler", incorporates incentive toys which are isolated from the main inspiratory circuit by a valve. Here we show that its use does not compromise drug delivery. Improved adherence combined with satisfactory delivery characteristics suggest that the Funhaler may be useful for management of young asthmatics. PMID:12818901

  2. Non-adherence in difficult asthma and advances in detection.

    PubMed

    Lindsay, John T; Heaney, Liam G

    2013-12-01

    Non-adherence to anti-inflammatory therapies is common in patients referred for specialist assessment at difficult-to-treat asthma services. In the difficult asthma setting, non-adherence to treatment is associated with poor baseline asthma control, increased frequency of exacerbations and asthma-related hospitalizations, as well as increased risk of death. Here, we present a review of the current literature surrounding the prevalence and risks of non-adherence in difficult asthma and we report on current methods of measuring treatment adherence and advances in the detection of non-adherence. We will also explore methods by which non-adherence in difficult asthma can be addressed.

  3. Developing registries of volunteers: key principles to manage issues regarding personal information protection.

    PubMed

    Lévesque, Emmanuelle; Leclerc, Dominic; Puymirat, Jack; Knoppers, Bartha Maria

    2010-11-01

    Much biomedical research cannot be performed without recruiting human subjects. Increasingly, volunteer registries are being developed to assist researchers with this challenging task. Yet, volunteer registries raise confidentiality issues. Having recently developed a registry of volunteers, the authors searched for normative guidance on how to implement the principle of confidentiality. The authors found that the protection of confidentiality in registries are based on the 10 key elements which are elaborated in detail in the Canadian Standards Association Model Code. This paper describes how these 10 detailed key principles can be used during the developmental stages of volunteer registries.

  4. Factors affecting medication adherence in elderly people

    PubMed Central

    Jin, Hyekyung; Kim, Yeonhee; Rhie, Sandy Jeong

    2016-01-01

    Background Little is known about the functional health literacy (FHL) associated with medication adherence in elderly patients. The aim of this study was to examine the FHL among older adults and identify influencing factors that can predict medication adherence. Methods This was a cross-sectional survey. Participants (n=160) aged 65 years and older were selected from outpatient clinics of 3 tertiary care hospitals, 6 community pharmacies, and 2 senior centers between November 1 and 30, 2014. The participants’ FHL was measured using the Korean Functional Health Literacy Test, which consists of 15 items including 8 numeracy and 7 reading comprehension items. Medication adherence was measured by the Adherence to Refills and Medication Scale. Descriptive statistics, chi-square or Fisher’s exact test, and multiple regression analyses were used to analyze the data. Results The mean score of the total FHL was 7.72±3.51 (range 0–15). The percentage of the total number of correct answers for the reading comprehension subtest and numeracy subtest were 48.1% and 54.4%, respectively. Among 160 participants, 52.5% showed low adherence to medication. The factors affecting medication adherence included the patient’s degree of satisfaction with the service (β=−0.215, P=0.022), sufficient explanation of medication counseling (β=−0.335, P=0.000), education level (β=−0.153, P=0.045), health-related problems (β=−0.239, P=0.004), and dosing frequency (β=0.189, P=0.018). Conclusion In this study, we found medication adherence of elderly patients was associated with education level, health-related problems, dosing frequency, satisfaction with patient counseling, and explanation of medication, but no association was found with FHL. Pharmacists should consider elderly patients’ individual characteristics such as educational background and specific patient-related health problems, provide sufficient information and explanation of medication, and ensure patient

  5. Bacterial adherence to anodized titanium alloy

    NASA Astrophysics Data System (ADS)

    Pérez-Jorge Peremarch, C.; Pérez Tanoira, R.; Arenas, M. A.; Matykina, E.; Conde, A.; De Damborenea, J. J.; Gómez Barrena, E.; Esteban, J.

    2010-11-01

    The aim of this study was to evaluate Staphylococcus sp adhesion to modified surfaces of anodized titanium alloy (Ti-6Al-4V). Surface modification involved generation of fluoride-containing titanium oxide nanotube films. Specimens of Ti-6Al-4V alloy 6-4 ELI-grade 23- meets the requirements of ASTM F136 2002A (AMS 2631B class A1) were anodized in a mixture of sulphuric/hydrofluoric acid at 20 V for 5 and 60 min to form a 100 nm-thick porous film of 20 nm pore diameter and 230 nm-thick nanotube films of 100 nm in diameter. The amount of fluorine in the oxide films was of 6% and of 4%, respectively. Collection strains and six clinical strains each of Staphylococcus aureus and Staphylococcus epidermidis were studied. The adherence study was performed using a previously published protocol by Kinnari et al. The experiments were performed in triplicates. As a result, lower adherence was detected for collection strains in modified materials than in unmodified controls. Differences between clinical strains were detected for both species (p<0.0001, Kruskal-Wallis test), although global data showed similar results to that of collection strains (p<0.0001, Kruskal-Wallis test). Adherence of bacteria to modified surfaces was decreased for both species. The results also reflect a difference in the adherence between S. aureus and S. epidermidis to the modified material. As a conclusion, not only we were able to confirm the decrease of adherence in the modified surface, but also the need to test multiple clinical strains to obtain more realistic microbiological results due to intraspecies differences.

  6. Economic assessment of central cancer registry operations, Part III: Results from 5 programs.

    PubMed

    Tangka, Florence; Subramanian, Sujha; Beebe, Maggie Cole; Trebino, Diana; Michaud, Frances

    2010-01-01

    In this article, we report results from the cost analysis of 5 central cancer registries funded by the National Program of Cancer Registries (NPCR). To estimate the true economic costs of operating a cancer registry, we used a cost-assessment tool (CAT) to collect data on all registry activities, not just those funded by the NPCR. Data were collected on actual, rather than budgeted, expenditures, including personnel, consultants, information technology (IT) support, and other factors influencing costs. Factors that can affect registry costs include the amount of consolidation from abstract to incident cases, the method of data reporting, the number of edits that must be performed manually versus electronically, and the amount of interstate data exchange required of a registry. Expenditures were allocated to specific surveillance and data enhancement and analysis activities. Our study confirmed that cost per case varies across registry activities. The cost of surveillance activities per case ranges from $24.79 to $95.78 while the cost of data enhancement and analysis registry activities per reported cancer case ranges from $2.91 to $9.32. Total cost per reported cancer case also varies, ranging from $30 to slightly more than $100, with a median of $45.84. Further research using data from all NPCR-funded registries is required to assess reasons for this variation. Information gained from such an assessment will improve efficiency in registry operations and provide data to better quantify the funding requirements for expanding registry activities.

  7. Need for a roadmap for development of a coordinated national registry programme.

    PubMed

    Wilkins, S; Best, R L; Evans, S M

    2015-11-01

    Clinical quality registries are an overlooked and under-funded arm of clinical research in Australia. Registries are databases for patients with a particular disease, or who undergo a procedure, or use a health resource. Registries, where properly funded and universally adopted, have provided substantial benefits to the quality of healthcare and, in some cases, have had demonstrable effect in reducing costs. There is a lack of a coordinated programme for both funding and development of registries in Australia. A coordinated effort is required to address key gaps in registry coverage and ensure registries comply with appropriate technical and operating principles, and target areas where registries can add value to the health system. This will ensure that Australia is competitive with its international peers in this dynamic environment.

  8. Psychological and Educational Intervention to Improve Tuberculosis Treatment Adherence in Ethiopia Based on Health Belief Model: A Cluster Randomized Control Trial

    PubMed Central

    Shojaeizadeh, Davoud; Tol, Azar; Garmaroudi, Gholamreza; Yekaninejad, Mir Saeed; Kebede, Abebaw; Ejeta, Luche Tadesse; Kassa, Desta; Klinkenberg, Eveline

    2016-01-01

    , which were guided by HBM, significantly decreased treatment non-adherence level among intervention group. Provision of psychological counseling and health education to TB patients who are on regular treatment is recommended. This could be best achieved if these interventions are guided by behavioral theories and incorporated into the routine TB treatment strategy. Trial Registration Pan African Clinical Trials Registry PACTR201506001175423 PMID:27167378

  9. A higher adherence to a Mediterranean-style diet is inversely associated with the development of frailty in community-dwelling elderly men and women.

    PubMed

    Talegawkar, Sameera A; Bandinelli, Stefania; Bandeen-Roche, Karen; Chen, Ping; Milaneschi, Yuri; Tanaka, Toshiko; Semba, Richard D; Guralnik, Jack M; Ferrucci, Luigi

    2012-12-01

    Adherence to a Mediterranean-style diet is associated with a lower risk for mortality, cognitive decline, and dementia. Whether adherence to a Mediterranean-style diet protects against age-related frailty is unclear. Therefore, our objective was to examine the association between a Mediterranean-style diet with the risk of frailty in community-dwelling older persons. We conducted longitudinal analyses using data from 690 community-living persons (≥65 y) who were randomly selected from a population registry in Tuscany, Italy. Participants of the Invecchiare in Chianti study of aging completed the baseline examination in 1998-2000 and were re-examined at least once over 6 y. Adherence to a Mediterranean-style diet (scored 0-9, modeled categorically as ≤3, 4-5, and ≥6) was computed from the European Prospective Investigation into Cancer and nutrition FFQ previously validated in this cohort. Frailty was defined as having at least 2 of the following criteria: poor muscle strength, feeling of exhaustion, low walking speed, and low physical activity. After a 6-y follow-up, higher adherence (score ≥6) to a Mediterranean-style diet was associated with lower odds of developing frailty [OR = 0.30 (95% CI: 0.14, 0.66)] compared with those with lower adherence (score ≤3). A higher adherence to a Mediterranean-style diet at baseline was also associated with a lower risk of low physical activity (OR = 0.62; 95% CI: 0.40, 0.96) and low walking speed [OR = 0.48 (95% CI: 0.27, 0.86)] but not with feelings of exhaustion and poor muscle strength. In community-dwelling older adults, higher adherence to a Mediterranean-style diet was inversely associated with the development of frailty.

  10. 75 FR 38145 - Announcing the New National Electronic Job Registry for Use in the H-2A Temporary Agricultural...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-01

    ... disclose on the job registry information or data subject to privacy, security, or privilege limitations... Employment and Training Administration Announcing the New National Electronic Job Registry for Use in the H... that the National Electronic Job Registry (job registry) in which H-2A job orders will be posted...

  11. 49 CFR 390.111 - Requirements for continued listing on the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... Registry of Certified Medical Examiners. 390.111 Section 390.111 Transportation Other Regulations Relating... National Registry of Certified Medical Examiners § 390.111 Requirements for continued listing on the National Registry of Certified Medical Examiners. (a) To continue to be listed on the National Registry...

  12. 49 CFR 390.111 - Requirements for continued listing on the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... Registry of Certified Medical Examiners. 390.111 Section 390.111 Transportation Other Regulations Relating... National Registry of Certified Medical Examiners § 390.111 Requirements for continued listing on the National Registry of Certified Medical Examiners. (a) To continue to be listed on the National Registry...

  13. Using communication skills to improve adherence in children with chronic disease: the adherence equation.

    PubMed

    Brand, Paul L P; Klok, Ted; Kaptein, Adrian A

    2013-12-01

    Nonadherence to maintenance medication is common in paediatric chronic conditions. Despite the common belief that nonadherence is therapy-resistant, and the apparent lack of evidence for successful interventions to improve adherence, there is, in fact, a considerable body of evidence suggesting that adherence can be improved by applying specific communicative consultation skills. These can be summarized as the adherence equation: adherence=follow-up+dialogue+barriers and beliefs+empathy and education => concordance. Close follow-up of children with a chronic condition is needed to establish a therapeutic partnership with the family. Teaching self management skills is not a unidirectional process of providing information, but requires a constructive and collaborative dialogue between the medical team and the family. Identifying barriers to adherence can be achieved in a non-confrontational manner, by showing a genuine interest what the patient's views and preferences are. In particular, parental illness perceptions and medication beliefs should be identified, because they are strong drivers of nonadherence. Through empathic evidence-based education, such perceptions and beliefs can be modified. By applying these strategies, concordance between the child's family and the medical team can be achieved, resulting in optimal adherence to the jointly created treatment plan.

  14. Treatment Adherence in Adolescents With Inflammatory Bowel Disease: The Collective Impact of Barriers to Adherence and Anxiety/Depressive Symptoms

    PubMed Central

    Gray, Wendy N.; Denson, Lee A.; Baldassano, Robert N.

    2012-01-01

    Objective Knowledge of factors impacting adolescents’ ability to adhere to their inflammatory bowel disease (IBD) regimen is limited. The current study examines the collective impact of barriers to adherence and anxiety/depressive symptoms on adolescent adherence to the IBD regimen. Methods Adolescents (n = 79) completed measures of barriers to adherence, adherence, and anxiety/depressive symptoms at one of two specialty pediatric IBD clinics. Results Most adolescents reported barriers to adherence and 1 in 8 reported borderline or clinically elevated levels of anxiety/depressive symptoms. Anxiety/depressive symptoms moderated the relationship between barriers to adherence and adherence. Post hoc probing revealed a significant, additive effect of higher anxiety/depressive symptoms in the barriers–adherence relationship, with adherence significantly lower among adolescents with higher barriers and higher anxiety/depressive symptoms. Conclusions In order to optimize adherence in adolescents, interventions should target not only barriers to adherence but also any anxiety/depressive symptoms that may negatively impact efforts to adhere to recommended treatment. PMID:22080456

  15. The use of databases and registries to enhance colonoscopy quality.

    PubMed

    Logan, Judith R; Lieberman, David A

    2010-10-01

    Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future.

  16. The national alpha-1 antitrypsin deficiency registry in Poland.

    PubMed

    Chorostowska-Wynimko, Joanna; Struniawski, Radoslaw; Sliwinski, Paweł; Wajda, Beata; Czajkowska-Malinowska, Małgorzata

    2015-05-01

    The alpha-1 antitrypsin deficiency (AATD) targeted screening program, together with the National Registry, were established in Poland in 2010 soon after the AATD diagnostics became available. Between 2010 and 2014 a total of 2525 samples were collected from respiratory patients countrywide; 55 patients with severe AAT deficiency or rare mutations were identified and registered, including 36 PiZZ subjects (65%). The majority of AATD patients were diagnosed with COPD (40%) or emphysema (7%), but also with bronchial asthma (16%) and bronchiectasis (13%). Therefore, the registry has proved instrumental in setting-up the AATD-dedicated network of respiratory medical centres in Poland. Since augmentation therapy is not reimbursed in our country, the smoking cessation guidance, optimal pharmacotherapy of respiratory symptoms as well the early detection, and effective treatment of exacerbations is absolutely essential.

  17. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    PubMed Central

    Galluccio, Felice; Matucci-Cerinic, Marco

    2010-01-01

    Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability. PMID:20862203

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

    PubMed

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

    2015-01-01

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

  19. EPA Facility Registry Service (FRS): AIRS_AQS

    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 Air Quality System (AQS). The AQS contains ambient air pollution data collected by EPA, State, Local, and Tribal air pollution control agencies from thousands of monitoring stations. 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. This data set contains the subset of FRS integrated facilities that link to monitoring stations once the AQS data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  20. Measuring Adherence to Practice Guidelines for the Management of Hypertension

    PubMed Central

    Milchak, Jessica L.; Carter, Barry L.; Ardery, Gail; James, Paul A.

    2006-01-01

    Adherence to practice guidelines is frequently used as a measure of quality of care. Numerous studies have evaluated physician adherence to hypertension guidelines by prescription data, physician survey data, or medical record review. However, most have methodological limitations that might underestimate physician adherence. Accurate and meaningful characterization of adherence rests on evaluation of varied components of hypertension care, use of explicit validated performance measures, incorporation of implicit and explicit review, and linkage of process measures to blood pressure outcomes. PMID:15381676

  1. Improved assay for quantitating adherence of ruminal bacteria to cellulose.

    PubMed Central

    Rasmussen, M A; White, B A; Hespell, R B

    1989-01-01

    A quantitative technique suitable for the determination of adherence of ruminal bacteria to cellulose was developed. This technique employs adherence of cells to cellulose disks and alleviates the problem of nonspecific cell entrapment within cellulose particles. By using this technique, it was demonstrated that the adherence of Ruminococcus flavefaciens FD1 to cellulose was inhibited by formaldehyde, methylcellulose, and carboxymethyl cellulose. Adherence was unaffected by acid hydrolysates of methylcellulose, glucose, and cellobiose. PMID:2782879

  2. 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

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Material Safety Data Sheets (MSDSs) listed reflect product inventories and associated MSDSs which were submitted to the Toxic Substance Registry data base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of NASA Kennedy. 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 NASA Kennedy. Indices are provided for manufacturers, trademarks, and stock numbers.

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

    NASA Technical Reports Server (NTRS)

    1991-01-01

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

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

    NASA Technical Reports Server (NTRS)

    1994-01-01

    The October 1994 revision of the KSC Toxic Substances Registry System (TSRS) Material Safety Data Sheets (MSD's) is presented. The listed MSD's which were submitted to the TSRS are 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.

  7. Using registries to identify adverse events in rheumatic diseases.

    PubMed

    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

    2013-11-01

    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.

  8. Online Registries for Researchers: Using ORCID and SciENcv.

    PubMed

    Vrabel, Mark

    2016-12-01

    The Open Researcher and Contributor ID (ORCID) registry helps resolve name ambiguity by assigning persistent unique identifiers that automatically link to a researcher's publications, grants, and other activities. This article provides an overview of ORCID and its benefits, citing several examples of its use in cancer and nursing journals. The article also briefly describes My NCBI and the Science Experts Network Curriculum Vitae (SciENcv) and its connection to ORCID.

  9. Understanding how adherence goals promote adherence behaviours: a repeated measure observational study with HIV seropositive patients

    PubMed Central

    2012-01-01

    Background The extent to which patients follow treatments as prescribed is pivotal to treatment success. An exceptionally high level (> 95%) of HIV medication adherence is required to suppress viral replication and protect the immune system and a similarly high level (> 80%) of adherence has also been suggested in order to benefit from prescribed exercise programmes. However, in clinical practice, adherence to both often falls below the desirable level. This project aims to investigate a wide range of psychological and personality factors that may lead to adherence/non-adherence to medical treatment and exercise programmes. Methods HIV positive patients who are referred to the physiotherapist-led 10-week exercise programme as part of the standard care are continuously recruited. Data on social cognitive variables (attitude, intention, subjective norms, self-efficacy, and outcome beliefs) about the goal and specific behaviours, selected personality factors, perceived quality of life, physical activity, self-reported adherence and physical assessment are collected at baseline, at the end of the exercise programme and again 3 months later. The project incorporates objective measures of both exercise (attendance log and improvement in physical measures such as improved fitness level, weight loss, improved circumferential anthropometric measures) and medication adherence (verified by non-invasive hair analysis). Discussion The novelty of this project comes from two key aspects, complemented with objective information on exercise and medication adherence. The project assesses beliefs about both the underlying goal such as following prescribed treatment; and about the specific behaviours such as undertaking the exercise or taking the medication, using both implicit and explicit assessments of patients’ beliefs and attitudes. We predict that i) the way people think about the underlying goal of their treatments explains medication and exercise behaviours over and above

  10. The importance of rheumatology biologic registries in Latin America.

    PubMed

    de la Vega, Maria; da Silveira de Carvalho, Hellen M; Ventura Ríos, Lucio; Goycochea Robles, Maria V; Casado, Gustavo C

    2013-04-01

    Rheumatoid arthritis is a systemic inflammatory disorder characterized by joint articular pain and disability. Although there is scarcity of data available on the incidence and prevalence of RA in Latin America, there is a growing recognition of this disease where chronic diseases are on the rise and infectious disease on the decline. RA is a substantial burden to patients, society, and the healthcare system. The heterogeneity identified within RA presents an opportunity for personalized medicine, especially in regions with such demographic diversity as that of Latin America. To understand the long-term effects of treatment for RA especially on safety, registries have been established, a number of which have been created in Latin America. Despite their weaknesses (e.g., lack of controls and randomization), registries have provided additional and complementary information on the use of biologics in clinical practice in Latin America and other regions. Although certain challenges remain in the implementation and maintenance of registries, they continue to provide real-life data to clinical practice contributing to improved patient care.

  11. Proposal for a Prospective Registry for Moyamoya Disease in Japan

    PubMed Central

    KAZUMATA, Ken; ITO, Masaki; UCHINO, Haruto; NISHIHARA, Hiroshi; HOUKIN, Kiyohiro

    2017-01-01

    The number of clinical research papers published worldwide on moyamoya disease (MMD) has increased recently. However, the majority of the literature comprises retrospective single-center studies collecting data on small numbers of patients. Several multi-center studies are ongoing in Japan; however, the current data are insufficient for comprehensively outlining the various characteristics of MMD. To enhance our knowledge on epidemiologic, vascular, and genetic aspects of MMD, a prospective multicenter registry will be established in Japan that will help to streamline clinical research as well as improve clinical treatments and long-term outcomes. Patients with MMD or secondary moyamoya syndrome referred to the participating centers will be invited to the registry. Demographic and physiological parameters, along with neuroimaging data will be collected chronologically. Clinical events, including neurological, medical, and surgical interventions will be recorded. Whole blood samples will be collected. Extra- and intracranial vascular tissue, and/or cerebrospinal fluid will also be collected from patients who undergo surgical revascularization. These biospecimens will be stored at the repositories and utilized for genome-wide association studies for identifying genetic variants, as well as tissue-specific proteomic, and/or molecular analyses. Ethics approval will be obtained at all facilities collecting biospecimens. The registry will provide descriptive statistics on functional outcomes, surgical techniques used, medications, and neurological events stratified according to patients’ clinical characteristics. We expect this study to provide novel insights in the management of MMD patients and design better therapies. PMID:28070115

  12. Proposal for a Prospective Registry for Moyamoya Disease in Japan.

    PubMed

    Kazumata, Ken; Ito, Masaki; Uchino, Haruto; Nishihara, Hiroshi; Houkin, Kiyohiro

    2017-02-15

    The number of clinical research papers published worldwide on moyamoya disease (MMD) has increased recently. However, the majority of the literature comprises retrospective single-center studies collecting data on small numbers of patients. Several multi-center studies are ongoing in Japan; however, the current data are insufficient for comprehensively outlining the various characteristics of MMD. To enhance our knowledge on epidemiologic, vascular, and genetic aspects of MMD, a prospective multicenter registry will be established in Japan that will help to streamline clinical research as well as improve clinical treatments and long-term outcomes. Patients with MMD or secondary moyamoya syndrome referred to the participating centers will be invited to the registry. Demographic and physiological parameters, along with neuroimaging data will be collected chronologically. Clinical events, including neurological, medical, and surgical interventions will be recorded. Whole blood samples will be collected. Extra- and intra-cranial vascular tissue, and/or cerebrospinal fluid will also be collected from patients who undergo surgical revascularization. These biospecimens will be stored at the repositories and utilized for genome-wide association studies for identifying genetic variants, as well as tissue-specific proteomic, and/or molecular analyses. Ethics approval will be obtained at all facilities collecting biospecimens. The registry will provide descriptive statistics on functional outcomes, surgical techniques used, medications, and neurological events stratified according to patients' clinical characteristics. We expect this study to provide novel insights in the management of MMD patients and design better therapies.

  13. Positive and negative effects of IT on cancer registries.

    PubMed

    Mohammadzadeh, Niloofar; Safdari, Reza; Rahimi, Azin

    2013-01-01

    In the new millennium people are facing serious challenges in health care, especially with increasing non- communicable diseases (NCD). One of the most common NCDs is cancer which is the leading cause of death in developed countries and in developing countries is the second cause of death after heart diseases. Cancer registry can make possible the analysis, comparison and development of national and international cancer strategies and planning. Information technology has a vital role in quality improvement and facility of cancer registries. With the use of IT, in addition to gaining general benefits such as monitoring rates of cancer incidence and identifying planning priorities we can also gain specific advantages such as collecting information for a lifetime, creating tele medical records, possibility of access to information by patient, patient empowerment, and decreasing medical errors. In spite of the powerful role of IT, we confront various challenges such as general problems, like privacy of the patient, and specific problems, including possibility of violating patients rights through misrepresentation, omission of human relationships, and decrease in face to face communication between doctors and patients. By implementing appropriate strategies, such as identifying authentication levels, controlling approaches, coding data, and considering technical and content standards, we can optimize the use of IT. The aim of this paper is to emphasize the need for identifying positive and negative effects of modern IT on cancer registry in general and specific aspects as an approach to cancer care management.

  14. Pregnancy registries in epilepsy: a consensus statement on health outcomes.

    PubMed

    Meador, K J; Pennell, P B; Harden, C L; Gordon, J C; Tomson, T; Kaplan, P W; Holmes, G L; French, J A; Hauser, W A; Wells, P G; Cramer, J A

    2008-09-30

    Most pregnant women with epilepsy require antiepileptic drug (AED) therapy. Present guidelines recommend optimizing treatment prior to conception, choosing the most effective AED for seizure type and syndrome, using monotherapy and lowest effective dose, and supplementing with folate. The Epilepsy Therapy Project established the international Health Outcomes in Pregnancy and Epilepsy (HOPE) forum to learn more about the impact of AEDs on the developing fetus, particularly the role of pregnancy registries in studying AED teratogenicity. The primary outcome of interest in these registries is the occurrence of major congenital malformations, with some data collected on minor malformations. Cognitive and behavioral outcomes are often beyond the timeframe for follow-up of these registries and require independent study. The HOPE consensus report describes the current state of knowledge and the limitations to interpretations of information from the various sources. Data regarding specific risks for both older and newer AEDs need to be analyzed carefully, considering study designs and confounding factors. There is a critical need for investigations to delineate the underlying mechanisms and explain the variance seen in outcomes across AEDs and within a single AED.

  15. New registry and tracking system for renal transplantation in Japan.

    PubMed

    Yuzawa, K; Takahara, S; Kanmochi, T; Takahashi, K; Teraoka, S

    2010-12-01

    Following The Declaration of Istanbul 2008, a registration committees of The Japan Society for Transplantation and The Japanese Society for Clinical Renal Transplantation planned to establish a new registry and tracking system for renal transplant recipients and donors supported by a Health Labor Sciences Research Grant by The Ministry of Health Labour and Welfare. In place of the previous paper-based system, we established the new registry and tracking system, JARTRE (Japan Renal Transplantation Registry), using USB memory in 2009. Recipient and donor data were inputted into the USB memory at the transplantation centers. The memory was reviewed a yearly by committees. The recipient and donor registration included details from both. The tracking is performed centrally 3 months, 1 year, and every year after the operation. The advantages of this system are the ease of input, adequacy of the data, and rapid statistical processing. In 2009, we registered 97.9% of new renal transplantation recipients and donors; in 2008 it was more than 81.9% of all past renal transplantation recipients in Japan.

  16. Military Orthopaedic Trauma Registry: Quality Data Now Available.

    PubMed

    Rivera, Jessica C; Greer, Renee M; Wenke, Joseph C; Ficke, James R; Johnson, Anthony E

    2016-01-01

    The Military Orthopaedic Trauma Registry (MOTR) orginally began as part of the Department of Defense Trauma Registry (DoDTR) and became a live registry in 2013. As a quality improvement process, this study examined MOTR data for 20 female amputees compared with DoDTR data. The DoDTR provided diagnosis and procedure codes as a list but no details. The MOTR provided additional data, including specific limb, fracture classifications, and associated injuries per limb. The MOTR allowed for construction of a treatment time line for each limb, including number and timing of debridements, antibiotics, and implant types. Orthopaedic-specific complications were also coded more frequently in the MOTR and clearly identified with a specific injury and treatment. During initial quality control checks, the MOTR provides a greater volume and granularity of detail for orthopaedic-specific injury and treatment information, indicating that the MOTR is on track to provide a valuable repository for data-driven orthopaedic management of combat injury.

  17. Medication Adherence in Psychopharmacologically Treated Adults with ADHD

    ERIC Educational Resources Information Center

    Safren, Steven A.; Duran, Petra; Yovel, Iftah; Perlman, Carol A.; Sprich, Susan

    2007-01-01

    Objective: One of the potential causes of residual symptoms of ADHD in adults can be difficulties with consistent adherence to medications. Method: This formative study examined self-reported medication adherence in adults with ADHD with clinically significant symptoms despite medication treatment. Results: Mean adherence for the two-week period…

  18. A Matter of Trust: Patient Barriers to Primary Medication Adherence

    ERIC Educational Resources Information Center

    Polinski, J. M.; Kesselheim, A. S.; Frolkis, J. P.; Wescott, P.; Allen-Coleman, C.; Fischer, M. A.

    2014-01-01

    Primary medication adherence occurs when a patient properly fills the first prescription for a new medication. Primary adherence only occurs about three-quarters of the time for antihypertensive medications. We assessed patients' barriers to primary adherence and attributes of patient-provider discussions that might improve primary adherence…

  19. 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

    2016-08-21

    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.

  20. Medication Adherence among Older Adults with Schizophrenia

    PubMed Central

    Leutwyler, Heather C.; Fox, Patrick J.; Wallhagen, Margaret

    2014-01-01

    Older adults with schizophrenia are a growing segment of the population yet their physical and mental health status is extremely poor. The paper presents findings from a qualitative study that explored the understanding older adults with schizophrenia have of their physical health status. The study was conducted among 28 older adults with schizophrenia from a variety of settings using semi-structured interviews and participant observation. Self-management of psychiatric and non-psychiatric medications and its affect on their health status was one of the central themes that emerged from the study. Different styles of medication adherence were identified and factors associated with each style are presented. The findings provide insights into the design of clinical interventions aimed at promoting medication adherence among older adults with schizophrenia. PMID:23327119

  1. An ingestible sensor for measuring medication adherence.

    PubMed

    Hafezi, Hooman; Robertson, Timothy L; Moon, Greg D; Au-Yeung, Kit-Yee; Zdeblick, Mark J; Savage, George M

    2015-01-01

    In this paper, we describe the design and performance of the first integrated-circuit microsensor developed for daily ingestion by patients. The ingestible sensor is a device that allows patients, families, and physicians to measure medication ingestion and adherence patterns in real time, relate pharmaceutical compliance to important physiologic metrics, and take appropriate action in response to a patient's adherence pattern and specific health metrics. The design and theory of operation of the device are presented, along with key in-vitro and in-vivo performance results. The chemical, toxicological, mechanical, and electrical safety tests performed to establish the device's safety profile are described in detail. Finally, aggregate results from multiple clinical trials involving 412 patients and 5656 days of system usage are presented to demonstrate the device's reliability and performance as part of an overall digital health feedback system.

  2. Concordance of adherence measurement using self-reported adherence questionnaires and medication monitoring devices.

    PubMed

    Shi, Lizheng; Liu, Jinan; Koleva, Yordanka; Fonseca, Vivian; Kalsekar, Anupama; Pawaskar, Manjiri

    2010-01-01

    The primary objective of this review was to identify and examine the literature on the association between medication adherence self-reported questionnaires (SRQs) and medication monitoring devices. The primary literature search was performed for 1980-2009 using PubMed, PubMed In Process and Non-Indexed, Ovid MEDLINE, Ovid MEDLINE In-Process, PsycINFO (EBSCO), CINAHL (EBSCO), Ovid HealthStar, EMBASE (Elsevier) and Cochrane Databases and using the following search terms: 'patient compliance', 'medication adherence', 'treatment compliance', 'drug monitoring', 'drug therapy', 'electronic', 'digital', 'computer', 'monitor', 'monitoring', 'drug', 'drugs', 'pharmaceutical preparations', 'compliance' and 'medications'. We identified studies that included SRQs and electronic monitoring devices to measure adherence and focused on the SRQs that were found to be moderately to highly correlated with the monitoring devices. Of the 1679 citations found via the primary search, 41 full-text articles were reviewed for correlation between monitoring devices and SRQs. A majority (68%) of articles reported high (27%), moderate (29%) or significant (12%) correlation between monitoring devices (37 using Medication Event Monitoring System [MEMS®] and four using other devices) and SRQs (11 identified and numerous other unnamed SRQs). The most commonly used SRQs were the Adult/Pediatric AIDS Clinical Trial Group (AACTG/PACTG; 24.4%, 10/41) followed by the 4-item Morisky (9.8%, 4/41), Brief Medication Questionnaire (9.8%, 4/41) and visual analogue scale (VAS; 7.3%, 3/41). Although study designs differed across the articles, SRQs appeared to report a higher rate of medication adherence (+14.9%) than monitoring devices. In conclusion, several medication adherence SRQs were validated using electronic monitoring devices. A majority of them showed high or moderate correlation with medication adherence measured using monitoring devices, and could be considered for measuring patient

  3. Adherence and non-adherence to treatments: focus on pharmacy practice in Nepal.

    PubMed

    Bastakoti, Suresh; Khanal, Saval; Dahal, Bibek; Pun, Nirmala Tilija

    2013-04-01

    Nepal is one of the developing countries having many limitations in providing the quality health services to its population. In many countries, improvement in patients' adherence to the pharmacotherapy had been one of major outcome of quality pharmaceutical services. Till date, very less thing has been done in this area in Nepal; so it seems mandatory to improve the patient adherence to the treatment plans. Adherence to the medical therapy can be explained by the extent of the behavioral coincidence to the medication and non-medication regimen by a patient whereas compliance and concordance are two different models of patient adherence to the therapy. Compliance model suggests that patients have been brought responsible for being unable to follow 'doctor's order and concordance tempts to measure the degree of agreement between patient and his or her clinician about the nature of illness and the best possible therapy for the welfare of the patient. Non-adherence to the therapy may lead to different problems as consequences of non-adherence in four different level- individual, institutional, societal and national levels. Although some programs like, "Direct Observation Treatment, Short-course (DOTS) for tuberculosis, implementation of antiretroviral treatment schedules for HIV patients and pediatric vaccination models," are the examples of attention towards the cases of noncompliance in Nepal. It has long been faced its limitations in the forms of either untrained manpower or lack of good documentation of patients' adherence to therapy or high illiteracy rate or unaffordibility of patients to their treatment or lack of pharmaceutical care services.

  4. Marital satisfaction and adherence to religion

    PubMed Central

    Jafari, F; Neisani Samani, L; Fatemi, N; Ta’avoni, S; Abolghasemi, J

    2015-01-01

    Background: One of the most important determinants of health and marital satisfaction, the family and religious adherence can be effective because religion includes guidelines for life and providing a system of beliefs and values make these features can affect family life. Approach: This descriptive research - an analysis performed to assess the level of satisfaction of 47 questionnaires marital satisfaction questionnaire whose validity and reliability were evaluated and a couple of them asked to assess adherence to religion. The study population included 382 couples in Tehran that a cluster of 22 districts of Tehran were the selected. To analyze the data, ANOVA, Chi-square, and Pearson correlation coefficient using the software SPSS (version 22) became all tests were performed at the 5% level. Results: The data showed that the average age is 34 for women and 38 years for men and the majority of couples are in appropriate level in religiosity (40.5 percent). The results showed a main direct relation among religiosity and marital satisfaction of men and women (p ≤ 0.001). The correlation among religiosity and marital satisfaction of women r = 0.271 and this factor in men r = 0.200 was obtained indicating a direct relationship was significant. Conclusion: couples who were both committed to religion, their marital satisfaction score was more than couples without adherence to religion, and thus promoting religious beliefs and commitment can increase their marital satisfaction in couples. PMID:28316734

  5. [Drug prescriptions: Adherence and understanding in Madagascar].

    PubMed

    Raharinjatovo, L; Ralandison, S

    2015-01-01

    Frequently ignored or neglected, poor adherence is an important cause of treatment failure and a major public health problem. We assessed the factors involved in adherence in a hospital in Madagascar. This long-term study evaluated two groups of variables: patients' level of understanding of their disease and drug prescriptions, and the information on the prescription written by the doctor. We interviewed 93 in-patients (mean age: 50 years) and found that 16% were illiterate. Overall, 27% did not know the name of their illness, 34% were unaware of the treatment objectives, and 14% did not understand the drug prescription. On 20% of the prescriptions, the patients' name was not included, and the daily dose information and schedule was omitted from 16%. A day after receiving the prescription, only 64% had purchased the medication and only 53% of all patients had taken any. A correlation was observed between illiteracy, knowledge of the disease/treatment goals, and non-purchase of drugs. The poor quality of information contained in the prescriptions and patients' poor understanding of what they were supposed to do are obvious. Using pre-completed health forms and text messages might improve adherence.

  6. Systematic Review of Educational Interventions to Improve Glaucoma Medication Adherence

    PubMed Central

    Newman-Casey, Paula Anne; Weizer, Jennifer S.; Heisler, Michele; Lee, Paul P.; Stein, Joshua D.

    2014-01-01

    Adherence to prescribed glaucoma medications is often poor, and proper adherence can be challenging for patients. We systematically reviewed the literature and identified eight studies using educational interventions to improve glaucoma medication adherence. Overall, five of the eight studies found that educational interventions lead to a significant improvement in medication adherence, and the remaining studies found a trend towards improvement. Using information from this systematic review and Health Behavior Theory, we constructed a conceptual framework to illustrate how counseling and education can improve glaucoma medication adherence. More rigorous studies grounded in Health Behavior Theory with adequately powered samples and longer follow-up are needed. PMID:23697623

  7. Promoting adherence to nebulized therapy in cystic fibrosis: poster development and a qualitative exploration of adherence

    PubMed Central

    Jones, Stephen; Babiker, Nathan; Gardner, Emma; Royle, Jane; Curley, Rachael; Hoo, Zhe Hui; Wildman, Martin J

    2015-01-01

    Background Cystic fibrosis (CF) health care professionals recognize the need to motivate people with CF to adhere to nebulizer treatments, yet little is known about how best to achieve this. We aimed to produce motivational posters to support nebulizer adherence by using social marketing involving people with CF in the development of those posters. Methods The Sheffield CF multidisciplinary team produced preliminary ideas that were elaborated upon with semi-structured interviews among people with CF to explore barriers and facilitators to the use of nebulized therapy. Initial themes and poster designs were refined using an online focus group to finalize the poster designs. Results People with CF preferred aspirational posters describing what could be achieved through adherence in contrast to posters that highlighted the adverse consequences of nonadherence. A total of 14 posters were produced through this process. Conclusion People with CF can be engaged to develop promotional material to support adherence, providing a unique perspective differing from that of the CF multidisciplinary team. Further research is needed to evaluate the effectiveness of these posters to support nebulizer adherence. PMID:26346635

  8. Use of Anticoagulants and Antiplatelet Agents in Stable Outpatients with Coronary Artery Disease and Atrial Fibrillation. International CLARIFY Registry

    PubMed Central

    Fauchier, Laurent; Greenlaw, Nicola; Ferrari, Roberto; Ford, Ian; Fox, Kim M.; Tardif, Jean-Claude; Tendera, Michal; Steg, Ph. Gabriel

    2015-01-01

    Background Few data are available regarding the use of antithrombotic strategies in coronary artery disease patients with atrial fibrillation (AF) in everyday practice. We sought to describe the prevalence of AF and its antithrombotic management in a contemporary population of patients with stable coronary artery disease. Methods and Findings CLARIFY is an international, prospective, longitudinal registry of outpatients with stable coronary artery disease, defined as prior (≥12 months) myocardial infarction, revascularization procedure, coronary stenosis >50%, or chest pain associated with evidence of myocardial ischemia. Overall, 33,428 patients were screened, of whom 32,954 had data available for analysis at baseline; of these 2,229 (6.7%) had a history of AF. Median (interquartile range) CHA2DS2-VASc score was 4 (3, 5). Oral anticoagulation alone was used in 25.7%, antiplatelet therapy alone in 52.8% (single 41.8%, dual 11.0%), and both in 21.5%. OAC use was independently associated with permanent AF (p<0.001), CHA2DS2-VASc score (p=0.006), pacemaker (p<0.001), stroke (p=0.04), absence of angina (p=0.004), decreased left ventricular ejection fraction (p<0.001), increased waist circumference (p=0.005), and longer history of coronary artery disease (p=0.008). History of percutaneous coronary intervention (p=0.004) and no/partial reimbursement for cardiovascular medication (p=0.01, p<0.001, respectively) were associated with reduced oral anticoagulant use. Conclusions In this contemporary cohort of patients with stable coronary artery disease and AF, most of whom are theoretical candidates for anticoagulation, oral anticoagulants were used in only 47.2%. Half of the patients received antiplatelet therapy alone and one-fifth received both antiplatelets and oral anticoagulants. Efforts are needed to improve adherence to guidelines in these patients. Trial Registration ISRCTN registry of clinical trials: ISRCTN43070564. PMID:25915904

  9. Kitchen table wisdom: a Freirian approach to medication adherence.

    PubMed

    Williams, Ann B; Burgess, Jane D; Danvers, Karina; Malone, Janice; Winfield, Subrena D; Saunders, Lois

    2005-01-01

    Most interventions to promote medication adherence are based on psychological theories of individual behavior. In contrast, this article describes the theory and practice of a socially based adherence intervention that is guided by the educational principles of Paolo Freire. This approach asserts that adherence is influenced by the patient's social context and attempts to improve adherence through identifying social constraints on adherence behavior. The program builds on the traditions of patient education through home nursing visits. Using a dialectic process of dialogue and problem solving and working with a team that includes a nurse and a peer-educator, patients are encouraged to act to change their social environment to support their desire to achieve high levels of medication adherence. This strategy does not replace, but rather supplements, traditional methods of understanding individual patient behavior and allows the patient and the nurse to consider potential solutions to adherence challenges in the larger social context.

  10. Pediatric Psychologist Use of Adherence Assessments and Interventions

    PubMed Central

    Rohan, Jennifer M.; Martin, Staci; Hommel, Kevin; Greenley, Rachel Neff; Loiselle, Kristin; Ambrosino, Jodie; Fredericks, Emily M.

    2013-01-01

    Objective To document current clinical practices for medical regimen adherence assessment and intervention in the field of pediatric psychology. Methods 113 members of the Society of Pediatric Psychology completed an anonymous online survey that assessed use of adherence assessments and interventions in clinical practice, barriers and facilitators to their use, and preferred resources for obtaining information on adherence assessments and interventions. Results Respondents reported using a range of adherence assessment and intervention strategies, some of which are evidence-based. Barriers to implementing these clinical strategies included time constraints and lack of familiarity with available clinical tools. Respondents reported that education about effective clinical tools would facilitate their use of adherence assessments and interventions. Conclusions Future research and clinical efforts in adherence should consider developing practical tools for clinical practice, making accessible resources to promote dissemination of these tools, and increase understanding of clinician implementation of adherence assessments and interventions. PMID:23658375

  11. Trauma registries: history, logistics, limitations, and contributions to emergency medicine research.

    PubMed

    Zehtabchi, Shahriar; Nishijima, Daniel K; McKay, Mary Pat; Mann, N Clay

    2011-06-01

    Trauma registries have been designed to serve a number of purposes, including quality improvement, injury prevention, clinical research, and policy development. Since their inception over 30 years ago, there are increasingly more institutions with trauma registries, many of which submit data to a national trauma registry. The goal of this review is to describe the history, logistics, and characteristics of trauma registries and their contribution to emergency medicine and trauma research. Discussed in this review are the limitations of trauma registries, such as variability in quality and type of the collected data, absence of data pertaining to long-term and functional outcomes, prehospital information, and complications as well as other methodologic obstacles limiting the utility of registry data in clinical and epidemiologic research.

  12. 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.

  13. Fast ray-tracing algorithm for circumstellar structures (FRACS). I. Algorithm description and parameter-space study for mid-IR interferometry of B[e] stars

    NASA Astrophysics Data System (ADS)

    Niccolini, G.; Bendjoya, P.; Domiciano de Souza, A.

    2011-01-01

    Aims: The physical interpretation of spectro-interferometric data is strongly model-dependent. On one hand, models involving elaborate radiative transfer solvers are too time consuming in general to perform an automatic fitting procedure and derive astrophysical quantities and their related errors. On the other hand, using simple geometrical models does not give sufficient insights into the physics of the object. We propose to stand in between these two extreme approaches by using a physical but still simple parameterised model for the object under consideration. Based on this philosophy, we developed a numerical tool optimised for mid-infrared (mid-IR) interferometry, the fast ray-tracing algorithm for circumstellar structures (FRACS), which can be used as a stand-alone model, or as an aid for a more advanced physical description or even for elaborating observation strategies. Methods: FRACS is based on the ray-tracing technique without scattering, but supplemented with the use of quadtree meshes and the full symmetries of the axisymmetrical problem to significantly decrease the necessary computing time to obtain e.g. monochromatic images and visibilities. We applied FRACS in a theoretical study of the dusty circumstellar environments (CSEs) of B[e] supergiants (sgB[e]) in order to determine which information (physical parameters) can be retrieved from present mid-IR interferometry (flux and visibility). Results: From a set of selected dusty CSE models typical of sgB[e] stars we show that together with the geometrical parameters (position angle, inclination, inner radius), the temperature structure (inner dust temperature and gradient) can be well constrained by the mid-IR data alone. Our results also indicate that the determination of the parameters characterising the CSE density structure is more challenging but, in some cases, upper limits as well as correlations on the parameters characterising the mass loss can be obtained. Good constraints for the sg

  14. [Registries for rare diseases : OSSE - An open-source framework for technical implementation].

    PubMed

    Storf, Holger; Schaaf, Jannik; Kadioglu, Dennis; Göbel, Jens; Wagner, Thomas O F; Ückert, Frank

    2017-03-13

    Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard. The use of a central MDR allows for sharing the same data elements across any number of registries, thus providing a technical prerequisite for making data comparable and mergeable between registries and promoting interoperability.With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations. Using the federated search feature, data for clinical studies can be identified across registries. Data integrity, however, remains intact since no actual data leaves the premises without the owner's consent. Additionally, registry solutions other than OSSE can participate via the OSSE bridgehead, which acts as a translator between OSSE registry networks and non-OSSE registries. The pseudonymization service Mainzelliste adds further data protection.Currently, more than 10 installations are under construction in clinical environments (including university hospitals in Frankfurt, Hamburg, Freiburg and Münster). The feedback given by the users will influence further development of OSSE. As an example, the installation process of the registry for undiagnosed patients at University Hospital Frankfurt is described in more detail.

  15. Exposing Vital Forensic Artifacts of USB Devices in the Windows 10 Registry

    DTIC Science & Technology

    2015-06-01

    the Windows 10 registry. The focus was on the Windows Registry hives affected when USB storage devices are connected to a laptop configured with...Windows Registry hives affected when USB storage devices are connected to a laptop configured with Windows 10. Paths were identified that indicate the...Hewlett Packard EliteBook 8570p laptop . This device will be referred to as the Master Control Workstation (MCW) throughout this document. The MCW

  16. Pharmacy adherence measures to assess adherence to antiretroviral therapy: review of the literature and implications for treatment monitoring.

    PubMed

    McMahon, James H; Jordan, Michael R; Kelley, Karen; Bertagnolio, Silvia; Hong, Steven Y; Wanke, Christine A; Lewin, Sharon R; Elliott, Julian H

    2011-02-15

    Prescription or pill-based methods for estimating adherence to antiretroviral therapy (ART), pharmacy adherence measures (PAMs), are objective estimates calculated from routinely collected pharmacy data. We conducted a literature review to evaluate PAMs, including their association with virological and other clinical outcomes, their efficacy compared with other adherence measures, and factors to consider when selecting a PAM to monitor adherence. PAMs were classified into 3 categories: medication possession ratio (MPR), pill count (PC), and pill pick-up (PPU). Data exist to recommend PAMs over self-reported adherence. PAMs consistently predicted patient outcomes, but additional studies are needed to determine the most predictive PAM parameters. Current evidence suggests that shorter duration of adherence assessment (≤ 6 months) and use of PAMs to predict future outcomes may be less accurate. PAMs which incorporate the number of days for which ART was prescribed without the counting of remnant pills, are reasonable minimum-resource methods to assess adherence to ART.

  17. The potential and limitations of data from population-based state cancer registries.

    PubMed

    Izquierdo, J N; Schoenbach, V J

    2000-05-01

    Cancer incidence varies markedly among states because of population heterogeneity regarding risk, genetic, and demographic factors. Population-based cancer registries are essential to monitoring cancer trends and control. The Centers for Disease Control and Prevention and the North American Association of Central Cancer Registries, through the National Program of Cancer Registries, are helping state registries generate more and better data nationwide. The National Program of Cancer Registries has supported the enhancement of 36 registries and the creation of 13 new registries in 45 states, 3 territories, and the District of Columbia, providing national standards for completeness, timeliness, and quality; financial support; and technical assistance. Users must be aware of diverse issues that influence collection and interpretation of cancer registry data, such as multiple cancer diagnoses, duplicate reports, reporting delays, misclassification of race/ethnicity, and pitfalls in estimations of cancer incidence rates. Attention to these issues and intense use of the available data for cancer surveillance will enable maximum societal benefit from the emerging network of population-based state cancer registries.

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

    PubMed Central

    Baser, M E

    1992-01-01

    OBJECTIVES. 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. METHODS. 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. RESULTS. 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. CONCLUSIONS. 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. PMID:1636831

  19. Topography Influences Adherent Cell Regulation of Osteoclastogenesis.

    PubMed

    Nagasawa, M; Cooper, L F; Ogino, Y; Mendonca, D; Liang, R; Yang, S; Mendonca, G; Uoshima, K

    2016-03-01

    The importance of osteoclast-mediated bone resorption in the process of osseointegration has not been widely considered. In this study, cell culture was used to investigate the hypothesis that the function of implant-adherent bone marrow stromal cells (BMSCs) in osteoclastogenesis is influenced by surface topography. BMSCs isolated from femur and tibia of Sprague-Dawley rats were seeded onto 3 types of titanium surfaces (smooth, micro, and nano) and a control surface (tissue culture plastic) with or without osteogenic supplements. After 3 to 14 d, conditioned medium (CM) was collected. Subsequently, rat bone marrow-derived macrophages (BMMs) were cultured in media supplemented with soluble receptor activator of NF-κB ligand (RANKL) and macrophage colony-stimulating factor (M-CSF) as well as BMSC CM from each of the 4 surfaces. Gene expression levels of soluble RANKL, osteoprotegerin, tumor necrosis factor α, and M-CSF in cultured BMSCs at different time points were measured by real-time polymerase chain reaction. The number of differentiated osteoclastic cells was determined after tartrate-resistant acid phosphatase staining. Analysis of variance and t test were used for statistical analysis. The expression of prominent osteoclast-promoting factors tumor necrosis factor α and M-CSF was increased by BMSCs cultured on both micro- and nanoscale titanium topographies (P < 0.01). BMSC CM contained a heat-labile factor that increased BMMs osteoclastogenesis. CM from both micro- and nanoscale surface-adherent BMSCs increased the osteoclast number (P < 0.01). Difference in surface topography altered BMSC phenotype and influenced BMM osteoclastogenesis. Local signaling by implant-adherent cells at the implant-bone interface may indirectly control osteoclastogenesis and bone accrual around endosseous implants.

  20. Improving adherence and outcomes in diabetic patients

    PubMed Central

    Joshi, Renu; Joshi, Disha; Cheriyath, Pramil

    2017-01-01

    Objective Nonadherence in diabetes is a problem leading to wasted resources and preventable deaths each year. Remedies for diminishing nonadherence are many but marginally effective, and outcomes remain suboptimal. Aim The aim of this study was to test a new iOS “app”, PatientPartner. Derived from complexity theory, this novel technology has been extensively used in other fields; this is the first trial in a patient population. Methods Physicians referred patients who were “severely non-adherent” with HbA1c levels >8. After consent and random assignment (n=107), subjects in the intervention group were immersed in the 12-min PatientPartner game, which assesses and trains subjects on parameters of thinking that are critical for good decision making in health care: information management, stress coping, and health strategies. The control group did not play PatientPartner. All subjects were called each week for 3 weeks and self-reported on their medication adherence, diet, and exercise. Baseline and 3-month post-intervention HbA1c levels were recorded for the intervention group. Results Although the control group showed no difference on any measures at 3 weeks, the intervention group reported significant mean percentage improvements on all measures: medication adherence (57%, standard deviation [SD] 18%–96%, SD 9), diet (50%, SD 33%–75%, SD 28), and exercise (29%, SD 31%–43%, SD 33). At 3 months, the mean HbA1c levels in the intervention group were significantly lower (9.6) than baseline (10.7). Conclusion Many programs to improve adherence have been proved to be expensive and marginally effective. Therefore, improvements from the single use of a 12-min-long “app” are noteworthy. This is the first ever randomized, controlled trial to demonstrate that an “app” can impact the gold standard biological marker, HbA1c, in diabetes. PMID:28243070

  1. Epidemiology and management of cardiac arrest: what registries are revealing.

    PubMed

    Gräsner, Jan-Thorsten; Bossaert, Leo

    2013-09-01

    Major European institutions report cardiovascular disease (CVD) as the first cause of death in adults, with cardiac arrest and sudden death due to coronary ischaemia as the primary single cause. Global incidence of CVD is decreasing in most European countries, due to prevention, lifestyle and treatment. Mortality of acute coronary events inside the hospital decreases more rapidly than outside the hospital. To improve the mortality of cardiac arrest outside the hospital, reliable epidemiological and process figures are essential: "we can only manage what we can measure". Europe is a patchwork of 47 countries (total population of 830 million), with a 10-fold difference in incidence of coronary heart disease between North and South, East and West, and a 5-fold difference in number of EMS-treated cardiac arrest (range 17-53/1000,000/year). Epidemiology of cardiac arrest should not be calculated as a European average, but it is appropriate to describe the incidence of cardiac arrest, the resuscitation process, and the outcome in each of the European regions, for benchmarking and quality management. Epidemiological reports of cardiac arrest should specify definitions, nominator (number of cases) and denominator (study population). Recently some regional registries in North America, Japan and Europe fulfilled these conditions. The European Registry of Cardiac Arrest (EuReCa) has the potential to achieve these objectives on a pan-European scale. For operational applications, the Utstein definition of "Cardiac arrest" is used which includes the potential of survival. For application in community health, the WHO definition of "sudden death" is frequently used, describing the mode of death. There is considerable overlap between both definitions. But this explains that no single method can provide all information. Integrating data from multiple sources (local, national, multinational registries and surveys, death certificates, post-mortem reports, community statistics, medical

  2. Registry of hemophilia and other bleeding disorders in Syria.

    PubMed

    Ali, T; Schved, J F

    2012-11-01

    Creating a national registry for bleeding disorders is a major step in establishing a National Hemophilia Care Program in all countries. Creating such a registry which would contain accurate and regularly updated data, including laboratory analysis confirmed by a reference laboratory established at the Syrian Hemophilia Society. Blood samples were drawn and analysed in the Society reference laboratory for the following screening tests: prothrombin time (PT), APTT and coagulation factor assays. Inhibitor detection and VWF RiCof were performed depending on the result of the screening tests. HBs Ag, anti-HCV, anti-HIV 1+2 and syphilis tests were also performed to detect transfusion transmitted agents (TTA). Diagnosis of the bleeding disorder type was confirmed for 760 of these cases. Among the 760 confirmed patients, 82.5% had haemophilia. Among these, 89.6%were haemophilia A; 10.4% were haemophilia B; 8.3% had VWD; 9.2% had other rare bleeding disorders as follows: 1.2% FVII deficiency, 0.7% FV deficiency, 1.8% F1 deficiency, 0.4% FX deficiency, 1.4% platelets dysfunctions (mainly Glanzmann Thrombasthenia) and 3.7% had combined FVIII and FV deficiency. Eighty (21.3%) cases of 375 screened for transfusion transmitted agents were positive for at least one infection: 0.5% were HBsAg positive, 19.7% were anti-HCV positive, 0.8% had combined HBsAg and anti-HCV positivity and 0.3% was anti-Syphilis positive. All patients were negative for HIV1 and HIV2. The preliminary data presented here follow known data on haemophilia A, haemophilia B and VWD disease. This registry will certainly help in improving haemophilia care in Syria.

  3. Baseline Characteristics of the Korean Registry of Pulmonary Arterial Hypertension.

    PubMed

    Chung, Wook-Jin; Park, Yong Bum; Jeon, Chan Hong; Jung, Jo Won; Ko, Kwang-Phil; Choi, Sung Jae; Seo, Hye Sun; Lee, Jae Seung; Jung, Hae Ok

    2015-10-01

    Despite recent advances in understanding of the pathobiology and targeted treatments of pulmonary arterial hypertension (PAH), epidemiologic data from large populations have been limited to western countries. The aim of the Korean Registry of Pulmonary Arterial Hypertension (KORPAH) was to examine the epidemiology and prognosis of Korean patients with PAH. KORPAH was designed as a nationwide, multicenter, prospective data collection using an internet webserver from September 2008 to December 2011. A total of 625 patients were enrolled. The patients' mean age was 47.6 ± 15.7 yr, and 503 (80.5%) were women. The diagnostic methods included right heart catheterization (n = 249, 39.8%) and Doppler echocardiography (n = 376, 60.2%). The etiologies, in order of frequency, were connective tissue disease (CTD), congenital heart disease, and idiopathic PAH (IPAH) (49.8%, 25.4%, and 23.2%, respectively). Patients with WHO functional class III or IV at diagnosis were 43.4%. In total, 380 (60.8%) patients received a single PAH-specific treatment at the time of enrollment, but only 72 (18.9%) patients received combination therapy. Incident cases during the registry represented 297 patients; therefore, the incidence rate of PAH was 1.9 patients/yr/million people. The 1st-, 2nd-, and 3rd-yr estimated survival rates were 90.8%, 87.8%, and 84.4%, respectively. Although Korean PAH patients exhibited similar age, gender, and survival rate compared with western registries, they showed relatively more CTD-PAH in the etiology and also systemic lupus erythematosus among CTD-PAH. The data suggest that earlier diagnosis and more specialized therapies should be needed to improve the survival of PAH patients.

  4. Malignancies in Swedish persons with haemophilia: a longitudinal registry study.

    PubMed

    Lövdahl, Susanna; Henriksson, Karin M; Baghaei, Fariba; Holmström, Margareta; Berntorp, Erik; Astermark, Jan

    2016-09-01

    The aim of the study was to investigate, over time, the incidence of and mortality due to malignant diseases among persons with haemophilia, compared to matched controls. Persons with haemophilia A or B were enrolled via registries at each haemophilia centre, as well as from the National Patient Registry, and were compared to five sex and age-matched controls per patient. Data from the national Cancer Registry were linked to the study participants. A total of 1431 persons with haemophilia and 7150 matched controls were enrolled. Between the years 1972 and 2008, 164 malignancies were reported. The most common type of cancer among patients was prostate cancer, followed by haematologic malignancies, including lymphoma and leukaemia, which were significantly more frequent in patients [n = 35 (2.4%) vs. n = 60 (0.8%); P < 0.001]. Malignancies in bladder and other urinary organs were also significantly different [n = 21 (1.5%) vs. n = 46 (0.6%); P < 0.01]. The overall incidence rate ratio of malignancies per 1000 person-years compared to the controls was 1.3 [95% confidence interval (CI) 1.1, 1.6]. In subgroup analysis, the corresponding incidence rate ratios per 1000 person-years for persons with severe haemophilia was 1.7 (95% CI 0.9, 3.1) and that for mild/moderate haemophilia 1.1 (95% CI 0.8, 1.5). Swedish persons with haemophilia had a significantly higher incidence of malignant diseases than controls. These were primarily haematologic malignancies and cancer in urinary organs, and the difference independent of any co-infections with HIV and/or viral hepatitis. The findings indicate the importance of further studies and close follow-up of malignancies in persons with haemophilia.

  5. Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer: contributions from the Dutch Lynch syndrome registry.

    PubMed

    Vasen, Hans F A; Velthuizen, Mary E; Kleibeuker, Jan H; Menko, Fred H; Nagengast, Fokke M; Cats, Annemieke; van der Meulen-de Jong, Andrea E; Breuning, Martijn H; Roukema, Anne J; van Leeuwen-Cornelisse, Inge; de Vos Tot Nederveen Cappel, Wouter H; Wijnen, Juul T

    2016-07-01

    The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance when a family fulfilled specific diagnostic criteria. Since 2000 the registry has focused on family follow-up, and ensuring the quality of surveillance programs and appropriate clinical management. Since its founding, the registry has identified over 10,000 high-risk individuals with a diverse array of hereditary cancer syndromes. All were encouraged to participate in prevention programmes. The registry has published a number of studies that evaluated the outcome of surveillance protocols for colorectal cancer (CRC) in Lynch syndrome, as well as in familial colorectal cancer. In 2006, evaluation of the effect of registration and colonoscopic surveillance on the mortality rate associated with colorectal cancer (CRC) showed that the policy led to a substantial decrease in the mortality rate associated with CRC. Following discovery of MMR gene defects, the first predictive model that could select families for genetic testing was published by the Leiden group. In addition, over the years the registry has produced many cancer risk studies that have helped to develop appropriate surveillance protocols. Hereditary cancer registries in general, and the Lynch syndrome registry in particular, play an important role in improving the clinical management of affected families.

  6. Adherence and receptor relationships of Candida albicans.

    PubMed Central

    Calderone, R A; Braun, P C

    1991-01-01

    The cell surface of Candida albicans is composed of a variety of polysaccharides such as glucan, chitin, and mannan. The first two components primarily provide structure, while the mannan, often covalently linked to protein, constitutes the major antigen of the organism. Mannoproteins also have enzymatic activity (acid protease) and ligand-receptor functions. The complement receptors of C. albicans appear to be mannoproteins that are required for the adherence of the organism to endothelial cells. This is certainly true of the CR3-like protein of C. albicans. Proof that the CR3 is the Candida receptor for endothelial cells is derived from two observations. First, mutants lacking CR3 activity are less adherent in vitro and, in fact, less virulent. Second, the ligand recognized by the CR3 receptor (C3bi) as well as anti-CR3 antibodies blocks adherence of the organism to endothelial cells. The CR2 of C. albicans appears to promote the adherence of the organism to plastic substrates. Unlike the CR2 of mammalian cells, the Candida CR2 recognizes ligands containing the RGD sequence of amino acids in addition to the C3d ligand, which does not contain the RGD sequence. There is uncertainty as to whether the Candida CR2 and CR3 are, in fact, different proteins. A mannoprotein has also been described as the adhesin for epithelial cells. In this case, the receptor has a lectinlike activity and recognizes fucose- or glucosamine-containing glycoproteins of epithelial cells, depending on the strain of C. albicans. The oligosaccharide component of the receptor is probably not involved in ligand recognition and may serve to stabilize the receptor. However, the oligosaccharide factor 6 epitope of mannan may also provide adhesin activity in the recognition of epithelial cells. Mannoproteins can be extracted from cells by a number of reagents. Zymolyase, for instance, tends to remove structural mannoproteins, which contain relatively little protein and are linked to glucan. Reagents

  7. Comment on 'Bi nanolines on Si(001): registry with substrate'.

    PubMed

    Bowler, D R; Owen, J H G; Miki, K

    2006-03-28

    A recent article (Miwa et al 2005 Nanotechnology 16 2427) casts doubt on the four-dimer-wide Haiku model for the Bi nanoline on Si(001), suggesting instead that the three-dimer-wide Miki model (which had been ruled out) is a better fit in particular to x-ray data. The reasons why the Haiku model provides the best fit to all published data among currently proposed structures are discussed, concentrating on the width and registry of the Bi nanoline, and mentioning new data which shows that under appropriate conditions the two structures coexist in the same surface.

  8. [Data from the IN-HF Outcome registry].

    PubMed

    Misuraca, Gianfranco; Di Tano, Giuseppe; Camerini, Alberto; Cloro, Cosima; Gorini, Marco

    2012-05-01

    The IN-HF Outcome registry enrolled 1855 patients admitted for acute heart failure and 3755 outpatients with chronic heart failure seen at 64 cardiology units of the Italian Network-Heart Failure. We assessed gender-related differences in clinical characteristics, management, and short- and long-term mortality and morbidity outcomes. Women were older, more often hypertensive and with a higher prevalence of heart failure with preserved systolic function. Aggressive management was less frequent in women who underwent less often diagnostic and therapeutic procedures. We found no gender-related differences in either acute or long-term mortality nor in hospital readmissions.

  9. Adherence and Dosage Contributions to Parenting Program Quality

    PubMed Central

    Gross, Thomas J.; Mason, W. Alex; Parra, Gilbert; Oats, Robert; Ringle, Jay; Haggerty, Kevin P.

    2015-01-01

    Objective The 3 most frequently examined elements of treatment fidelity are adherence, dosage, and quality. The relationships between these fidelity elements are complex, and additional research is needed to provide clarity. Improving clarity may be especially relevant to parenting programs, which tend to include direct explicit instruction (DEI) elements (i.e., instruction, modeling, and practice). The adherence to and dosage of these DEI elements are frequently assumed to improve program quality; however, little information is available to determine if such adherence and dosage affect program quality. This study examines whether adherence to and dosage of DEI elements predict quality ratings for a widely disseminated, manualized parenting program. Method Adherence is defined as the percentage of intervention tasks completed for each DEI element. Dosage is defined as the number of minutes and seconds spent in each intervention DEI element. Treatment fidelity is assessed for 36 of 144 sessions across 10 program facilitators. A hierarchical linear regression analysis examines the contributions of adherence and dosage in the prediction of session quality ratings. Results The analysis indicates that adherence accounts for a significant proportion of the variance (26%), whereas dosage contributes a nonsignificant proportion of variance (11%). Adherence to skill practice was the strongest individual predictor (β = .445, p < .01). Conclusions Findings suggest that ensuring a high degree of adherence can contribute to quality program delivery. However, more exploration is needed to better understand the ways in which adherence and dosage of DEI elements affect program quality. PMID:26726301

  10. The use of incentives to reinforce medication adherence

    PubMed Central

    DeFulio, Anthony; Silverman, Kenneth

    2012-01-01

    Objective Poor medication adherence is a longstanding problem, and is especially pertinent for individuals with chronic conditions or diseases. Adherence to medications can improve patient outcomes and greatly reduce the cost of care. The purpose of the present review is to describe the literature on the use of incentives as applied to the problem of medication adherence. Methods We conducted a systematic review of peer-reviewed empirical evaluations of incentives provided to patients contingent upon medication adherence. Results This review suggests that incentive-based medication adherence interventions can be very effective, but there are few controlled studies. The studies on incentive-based medication adherence interventions most commonly feature patients taking medication for drug or alcohol dependence, HIV, or latent tuberculosis. Across studies that reported percent adherence comparisons, incentives increased adherence by a mean of 20 percentage points, but effects varied widely. Cross-study comparisons indicate a positive relationship between the value of the incentive and the impact of the intervention. Post-intervention evaluations were rare, but tended to find that adherence effects diminish after the interventions are discontinued. Conclusions Incentive-based medication adherence interventions are promising but understudied. A significant challenge for research in this area is the development of sustainable and cost-effective long-term interventions. PMID:22580095

  11. Antiretroviral adherence during pregnancy and postpartum in Latin America.

    PubMed

    Kreitchmann, Regis; Harris, D Robert; Kakehasi, Fabiana; Haberer, Jessica E; Cahn, Pedro; Losso, Marcelo; Teles, Elizabete; Pilotto, Jose H; Hofer, Cristina B; Read, Jennifer S

    2012-08-01

    Adherence to antiretrovirals by pregnant women (and postpartum women if breastfeeding) is crucial to effectively decrease maternal viral load and decrease the risk of mother-to-child transmission of HIV. Our objectives were to describe self-reported adherence to antiretrovirals during the antepartum (after 22 weeks of pregnancy) and postpartum periods (6-12 weeks and 6 months), and identify predictors of adherence among HIV-infected women enrolled and followed in a prospective cohort study from June 2008 to June 2010 at multiple sites in Latin America. Adherence was evaluated using the number of missed and expected doses during the 3 days before the study visit. At the pre-delivery visit, 340 of 376 women (90%) reported perfect adherence. This rate significantly decreased by 6-12 weeks (171/214 [80%]) and 6 months postpartum (163/199 [82%], p<0.01). The odds for less than perfect adherence at the pre-delivery visit was significantly higher for pregnant women with current tobacco use (odds ratio [OR]=2.9, 95% confidence interval [CI]: 1.46-6.14; p=0.0029). At 6-12 weeks postpartum, the probability of non-perfect adherence increased by 6% for each 1 year increase in age (OR=1.06, 95% CI: 1.00-1.12, p=0.0497). At 6 months postpartum, the odds of nonperfect adherence was higher for those who were currently using alcohol (OR=3.04, 95% CI: 1.34-6.90; p=0.0079). Although a self-report measure of adherence based on only 3 days may lead to overestimation of actual adherence over time, women with perfect adherence had lower viral loads and higher CD4 counts. Adherence to antiretrovirals decreased significantly postpartum. Interventions should target women at high risk for lower adherence during pregnancy and postpartum, including tobacco and alcohol users.

  12. Antiretroviral Adherence During Pregnancy and Postpartum in Latin America

    PubMed Central

    Harris, D. Robert; Kakehasi, Fabiana; Haberer, Jessica E.; Cahn, Pedro; Losso, Marcelo; Teles, Elizabete; Pilotto, Jose H.; Hofer, Cristina B.; Read, Jennifer S.

    2012-01-01

    Abstract Adherence to antiretrovirals by pregnant women (and postpartum women if breastfeeding) is crucial to effectively decrease maternal viral load and decrease the risk of mother-to-child transmission of HIV. Our objectives were to describe self-reported adherence to antiretrovirals during the antepartum (after 22 weeks of pregnancy) and postpartum periods (6–12 weeks and 6 months), and identify predictors of adherence among HIV-infected women enrolled and followed in a prospective cohort study from June 2008 to June 2010 at multiple sites in Latin America. Adherence was evaluated using the number of missed and expected doses during the 3 days before the study visit. At the pre-delivery visit, 340 of 376 women (90%) reported perfect adherence. This rate significantly decreased by 6–12 weeks (171/214 [80%]) and 6 months postpartum (163/199 [82%], p<0.01). The odds for less than perfect adherence at the pre-delivery visit was significantly higher for pregnant women with current tobacco use (odds ratio [OR]=2.9, 95% confidence interval [CI]: 1.46–6.14; p=0.0029). At 6–12 weeks postpartum, the probability of non-perfect adherence increased by 6% for each 1 year increase in age (OR=1.06, 95% CI: 1.00–1.12, p=0.0497). At 6 months postpartum, the odds of nonperfect adherence was higher for those who were currently using alcohol (OR=3.04, 95% CI: 1.34–6.90; p=0.0079). Although a self-report measure of adherence based on only 3 days may lead to overestimation of actual adherence over time, women with perfect adherence had lower viral loads and higher CD4 counts. Adherence to antiretrovirals decreased significantly postpartum. Interventions should target women at high risk for lower adherence during pregnancy and postpartum, including tobacco and alcohol users. PMID:22663185

  13. Adherence to medication in the community: audit cycle of interventions to improve the assessment of adherence

    PubMed Central

    Farooq, Saeed; Choudry, Abid

    2017-01-01

    Aims and method To investigate whether medication adherence is monitored during follow-up in out-patient reviews. A retrospective audit was carried out with a sample of 50 follow-up patients with a diagnosis of schizophrenia or schizoaffective disorder. Following this, interventions were made prior to the re-audit (including text messaging clinicians and prompt sheets in the out-patient department to encourage adherence discussions). Results There was an improvement on all the standards set for this audit following the interventions. More doctors had discussed medication adherence (62% second cycle v. 50% first cycle) with their patient and there was increased discussion and documentation regarding medication side-effects (60% second cycle v. 30% first cycle). More clinicians discussed the response to medication (60% second cycle v. 46% first cycle). Clinical implications Treatment adherence is not regularly monitored or recorded in clinical notes in routine psychiatric out-patient appointments. This highlights the need for regular training to improve practice. PMID:28184317

  14. Adherence to immunosuppression: a prospective diary study.

    PubMed

    Gordon, E J; Prohaska, T R; Gallant, M P; Siminoff, L A

    2007-12-01

    Immunosuppression adherence among kidney transplant recipients is essential for graft survival. However, nonadherence is common, jeopardizing graft survival. Besides skipping dosages, little is known about other forms of medication nonadherence and their underlying reasons. This study sought to examine patients' extent of medication adherence over time and reasons for nonadherence. Thirty-nine new kidney transplant recipients were asked to complete a month-long medication-taking diary that included reporting medication nonadherence such as skipped medications, medications taken early or late, taking dosages greater or less than prescribed, and the reason for each occurrence of nonadherence. Of the 20 (51%) patients who completed the diary, 11 (55%) reported at least 1 form of nonadherence. Eleven patients reported taking their immunosuppression at least 1 hour later than the prescribed time, 1 patient reported skipping medication, but no patients reported changing the dosage on their own. Immunosuppression was taken on average 1.5 hours after the prescribed time. Of those patients who took their medications late, there were on average 3.1 occasions of taking it late. The most common reasons for this behavior included health care-related issues, followed by oversleeping, being away from home, work-related barriers, and forgetting. The majority of kidney transplant recipients took medications later than prescribed during 1 month. Future research should determine the clinical impact on graft function of late administration of immunosuppression. Interventions should be designed to better assist kidney recipients with taking medications on time, especially when they are away from home.

  15. Statistical dynamics of religions and adherents

    NASA Astrophysics Data System (ADS)

    Ausloos, M.; Petroni, F.

    2007-02-01

    Religiosity is one of the most important sociological aspects of populations. All religions may evolve in their beliefs and adapt to the society developments. A religion is a social variable, like a language or wealth, to be studied like any other organizational parameter. Several questions can be raised, as considered in this study; e.g.: i) From a "macroscopic" point of view: How many religions exist at a given time? ii) From a "microscopic" viewpoint: How many adherents belong to one religion? Does the number of adherents increase or not, and how? No need to say that if quantitative answers and mathematical laws are found, agent-based models can be imagined to describe such non-equilibrium processes. It is found that empirical laws can be deduced and related to preferential attachment processes, like on an evolving network; we propose two different algorithmic models reproducing as well the data. Moreover, a population growth-death equation is shown to be a plausible modeling of evolution dynamics in a continuous-time framework. Differences with language dynamic competition are emphasized.

  16. Adherence to anti-estrogen therapy in seniors with breast cancer: how well are we doing?

    PubMed

    Trabulsi, Nora; Riedel, Kristen; Winslade, Nancy; Gregoire, Jean-Pierre; Meterissian, Sarkis; Abrahamovicz, Michal; Tamblyn, Robyn; Mayo, Nancy; Meguerditchian, Ari

    2014-01-01

    A third of breast cancers (BC) occur in women ≥65 years (seniors). Anti-estrogen therapy (AET) significantly reduces BC recurrence and death. This study characterizes determinants of adherence to AET in seniors with BC. Provincial cancer registry and administrative claims data were accessed for all non-metastatic BC diagnosed in Quebec (1998-2005) to identify seniors treated for 5 years with AET. Multivariate linear regression was used to assess the association with patient, disease, and physician characteristics and the 5-year medication possession ratio (MPR) for each patient. 4,715 women were included (mean age: 72.9). Mean MPR was 83.5%, 79% of patients reached a 5-year MPR of ≥80%, and 34% discontinued AET at some point during treatment. The cumulative probability of discontinuation was 33.8% (mean time to discontinuation 2.3 years). The MPR decreased with increasing age and non-BC related hospitalizations, p < 0.05. Each new medication added during the 5-years decreased the MPR by 0.3% (p < 0.05). Women with in situ disease, on antidepressants at baseline, or treated with Tamoxifen had a lower MPR by 6.5% (p = 0.0002), 4.7% (p = 0.003) and 6% (p = 0.001), respectively. Switching AET type was associated with a lower MPR by 5.3% (p = 0.002) if the switch occurred during the first year. Optimal 5-year adherence to AET in seniors with BC remained a challenge and medication discontinuation rates were high. Advanced age, increasing number of hospitalizations, in situ disease, baseline use of antidepressants, Tamoxifen (versus aromatase inhibitors), early switches of AET type, and newly added medications significantly reduced the MPR.

  17. Publications list of the United States Transuranium and Uranium Registries, 1968--1993

    SciTech Connect

    Kathren, R.L.; Hunacek, M.; Gervais, T.

    1993-07-01

    The United States Transuranium and Uranium Registries (USTUR) began with the establishment of the National Plutonium Registry in 1968. In 1910, the name was changed to the United States Transuranium Registry to reflect a broader concern with the entire spectrum of transuranium elements, and in 1918, a parallel but separate United States Uranium Registry was created to study the uranium decay series. With similar goals of understanding the biokinetics, dosimetry, and potential health effects of transuranic elements and uranium series based on actual human experience, the two registries were administratively joined in February 1992. Accordingly, compilation and publication of a complete listing and collection of Registries publications for from the inception through July 1993 was undertaken to coincide with the silver anniversary of the Registries. The following criteria were established for the various categories of publications included in the listing of publications: Journal Articles and Conference Proceedings -- Comprised of all known publications in the open peer reviewed scientific literature for research and related activities carried out, funded, or otherwise sponsored, wholly or in part, by the Registries. The peer reviewed literature was taken to include scientific journals and formal published proceedings of scientific meetings. Annual Reports -- These are annual or progress reports published by the Registries. Miscellaneous Publications -- These are professional or scientific publications of staff affiliated with the Registries at the time of publication that do not fit into the above categories. Included are abstracts, book reviews, letters to the editor, articles from the peer reviewed scientific literature and technical reports. Books and Book Chapters -- This category consists of scientific or technical books and book chapters authored by professional staff affiliated with the Registries at the time of preparation.

  18. Neutral red uptake inhibition in adhered and adhering rat hepatoma-derived Fa32 cells to predict human toxicity.

    PubMed

    Dierickx, Paul J; Scheers, Ellen M

    2002-01-01

    The cytotoxicity of the MEIC (Multicentre Evaluation of In vitro Cytotoxicity) reference chemicals was investigated by measuring the neutral red uptake inhibition in adhered and adhering rat hepatoma-derived Fa32 cells. The adhered cells were seeded and then treated and the adhering cells were treated simultaneously upon seeding. Five of the 44 test chemicals were twofold more toxic in adhering cells; ethylene glycol was 28-fold more toxic and mercuric chloride was 5.2-fold more toxic than in adhered cells. The cytotoxicity of dithiothreitol was altered in the same way as that of ethylene glycol, probably by interacting with calcium. When the neutral red uptake inhibition was compared with human toxicity, the correlation coefficient for adhering cells was almost identical to that obtained previously in human hepatoma-derived Hep G2 cells and slightly higher for adhered cells. The Hep G2 assay was the best acute in vitro assay for the prediction of human toxicity within the MEIC study. An obviously better correlation was obtained when the strong intoxicant mercuric chloride was withdrawn from the comparison, both for the adhered and the adhering cells. Altogether, the results can be integrated very well with the basal cytotoxicity concept.

  19. 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

  20. Dispelling myths about rare disease registry system development

    PubMed Central

    2013-01-01

    Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases. If designed appropriately, patient and disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, registries possess a diverse range of functionality, operate in different, often-times incompatible, software environments and serve various, and sometimes incongruous, purposes. Given the ambitious goals of the International Rare Diseases Research Consortium (IRDiRC) by 2020 and beyond, RDRs must be designed with the agility to evolve and efficiently interoperate in an ever changing rare disease landscape, as well as to cater for rapid changes in Information Communication Technologies. In this paper, we contend that RDR requirements will also evolve in response to a number of factors such as changing disease definitions and diagnostic criteria, the requirement to integrate patient/disease information from advances in either biotechnology and/or phenotypying approaches, as well as the need to adapt dynamically to security and privacy concerns. We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development. PMID:24131574