Science.gov

Sample records for adherence registry e-star

  1. e-Stars Template Builder

    NASA Technical Reports Server (NTRS)

    Cox, Brian

    2003-01-01

    e-Stars Template Builder is a computer program that implements a concept of enabling users to rapidly gain access to information on projects of NASA's Jet Propulsion Laboratory. The information about a given project is not stored in a data base, but rather, in a network that follows the project as it develops. e-Stars Template Builder resides on a server computer, using Practical Extraction and Reporting Language (PERL) scripts to create what are called "e-STARS node templates," which are software constructs that allow for project-specific configurations. The software resides on the server and does not require specific software on the user machine except for an Internet browser. A user's computer need not be equipped with special software (other than an Internet-browser program). e-Stars Template Builder is compatible with Windows, Macintosh, and UNIX operating systems. A user invokes e-Stars Template Builder from a browser window. Operations that can be performed by the user include the creation of child processes and the addition of links and descriptions of documentation to existing pages or nodes. By means of this addition of "child processes" of nodes, a network that reflects the development of a project is generated.

  2. 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.

  3. Seamless Distributed Observing with eSTAR

    NASA Astrophysics Data System (ADS)

    Allan, A.; Naylor, T.; White, R. R.; Seaman, R. L.

    2007-10-01

    In the last few years the ubiquitous availability of high bandwidth networks has changed the way both robotic and non-robotic telescopes operate. Single isolated telescopes are being integrated into expanding ``smart'' telescope networks that can span continents and respond to transient events in seconds. This development has led to a renaissance in the science of time-domain astrophysics, which is rapidly changing the way astronomers work. Using the emerging field of intelligent agent architectures to provide crucial decision making in software, we have built a distributed system that allows users to schedule observations seamlessly over a peer-to-peer network of geographically widely separated, heterogeneous telescopes. We present the current operations paradigm of the eSTAR (http://www.estar.org.uk/) network and explain how our recent work on event driven observing now provides a seamless cradle-to-grave system for autonomous observations of transient events.

  4. JBEI Registry

    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 Registriesmore » for data sharing and exchange.« less

  5. 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.

  6. 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...

  7. eSTAR: intelligent observing and rapid responses

    NASA Astrophysics Data System (ADS)

    Allan, Alasdair; Naylor, Tim; Steele, Iain A.; Jenness, Tim; Cavanagh, Brad; Economou, Frossie; Saunders, Eric; Adamson, Andy; Etherton, Jason; Mottram, Chris

    2004-09-01

    The eSTAR Project uses intelligent agent technologies to carry out resource discovery, submit observation requests and analyze the reduced data returned from a network of robotic telescopes in an observational grid. The agents are capable of data mining and cross-correlation tasks using on-line catalogues and databases and, if necessary, requesting additional data and follow-up observations from the telescopes on the network. We discuss how the maturing agent technologies can be used both to provide rapid followup to time critical events, and for long term monitoring of known sources, utilising the available resources in an intelligent manner.

  8. 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. PMID:25553603

  9. The virtual observatory registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Greene, G.; Le Sidaner, P.; Plante, R. L.

    2014-11-01

    In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources-typically, data and services-that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention common usage patterns and open issues as appropriate.

  10. 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.

  11. Second generation registry framework

    PubMed Central

    2014-01-01

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

  12. Stroke Trials Registry

    MedlinePlus

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

  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. [Implications of the REACH registry for neurologists].

    PubMed

    Roquer, Jaume

    2009-09-01

    Data from the REACH registry help to understand distinct problems affecting patients with arteriosclerotic disease. The arteriosclerotic burden evaluated by quantifying the number of diseased vascular territories is a marker of poor prognosis that increases the risk of recurrences, morbidity and mortality and death at 1 year. In cerebrovascular disease, it is important to highlight that patients with stroke are those with the highest rates of cerebral reinfarction and also show the highest combined rate of cardiovascular death or non-fatal myocardial infarction or stroke. Special care must be taken in patients who have had a transient ischemic attack since these patients accumulate a number of vascular risk factors. Data from the REACH registry suggest that preventive treatment and control of vascular risk factors could be improved, especially control of hypertension, diabetes and hypercholesterolemia. Consequently, preventive measures should be intensified in these patients to achieve adequate control of risk factors through encouraging healthy lifestyle habits, appropriate use of drugs and treatment adherence.

  15. Images of unclassified and supergiant B[e] stars disks with interferometry

    NASA Astrophysics Data System (ADS)

    Millour, Florentin; Meilland, Anthony; Chesneau, Olivier; Fernandes, Marcelo Borges; Groh, Jose H.; Driebe, Thomas; Liermann, Adrianne; Weigelt, Gerd

    2011-07-01

    B[e] stars are among the most peculiar objects in the sky. This spectral type, characterised by allowed and forbidden emission lines, and a large infrared excess, does not represent an homogenous class of objects, but instead, a mix of stellar bodies seen in all evolutionary status. Among them, one can find Herbig stars, planetary nebulae central stars, interacting binaries, supermassive stars, and even ``unclassified'' B[e] stars: systems sharing properties of several of the above. Interferometry, by resolving the innermost regions of these stellar systems, enables us to reveal the true nature of these peculiar stars among the peculiar B[e] stars.

  16. Psoriatic Arthritis Registries.

    PubMed

    Sarzi-Puttini, Piercarlo; Varisco, Valentina; Ditto, Maria Chiara; Benucci, Maurizio; Atzeni, Fabiola

    2015-11-01

    The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics, efficacy, and safety of all licensed biological drugs. Their findings also help to improve our understanding of the quality of life and working ability of patients receiving biological drugs, and suggest methods for allocating resources. However, there are only a few registries for psoriatic arthritis, and efforts should be made to increase their number to obtain further reliable and useful data.

  17. Regulatory insight into the European human pluripotent stem cell registry.

    PubMed

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-12-01

    The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders. PMID:25457963

  18. Regulatory insight into the European human pluripotent stem cell registry.

    PubMed

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-12-01

    The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders.

  19. HIV Medication Adherence

    MedlinePlus

    HIV Treatment HIV Medication Adherence (Last updated 3/1/2016; last reviewed 3/1/2016) Key Points Medication adherence means sticking ... exactly as prescribed. Why is adherence to an HIV regimen important? Adherence to an HIV regimen gives ...

  20. Malaysian Twin Registry.

    PubMed

    Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

    2013-02-01

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

  1. eSTAR: Astronomers, Agents and when Robotic Telescopes aren't...

    NASA Astrophysics Data System (ADS)

    Allan, A.; Naylor, T.; Steele, I.; Carter, D.; Jenness, T.; Economou, F.; Adamson, A.

    2004-07-01

    The eSTAR Project {http://www.estar.org.uk/} uses intelligent agent technologies to carry out resource discovery, submit observation requests and analyse the reduced data returned from a network of robotic telescopes. The agents are capable of data mining and cross-correlation tasks using online catalogues and databases and, if necessary, requesting additional data and follow-up observations from the telescopes on the network. We discuss how the agent technologies used in the eSTAR prototype have matured and have now been deployed in the field on research class telescopes that on first inspection don't fit into the autonomous robotic telescope paradigm.

  2. 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

  3. Treatment adherence in psychoses.

    PubMed

    David, Anthony S

    2010-12-01

    A well-conducted randomised controlled trial of an intervention to improve treatment adherence in psychosis published in this issue shows beneficial effects on self- and observer-rated adherence and trends towards fewer hospital readmissions. Partial adherence is the single most important barrier to optimal treatment. National Institute for Health and Clinical Excellence guidelines on adherence need to be revised.

  4. 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

  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. Clinical Cancer Registries - Are They Up for Health Services Research?

    PubMed

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Schramm, Wendelin

    2016-01-01

    Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR. PMID:27577380

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

    PubMed

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

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

  8. 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.

  9. Worldwide variability in deceased organ donation registries

    PubMed Central

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-01-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  10. Spectroscopic survey of emission-line stars - I. B[e] stars

    NASA Astrophysics Data System (ADS)

    Aret, A.; Kraus, M.; Šlechta, M.

    2016-02-01

    Emission-line stars are typically surrounded by dense circumstellar material, often in form of rings or disc-like structures. Line emission from forbidden transitions trace a diversity of density and temperature regimes. Of particular interest are the forbidden lines of [O I] λλ6300, 6364 and [Ca II] λλ7291, 7324. They arise in complementary, high-density environments, such as the inner-disc regions around B[e] supergiants. To study physical conditions traced by these lines and to investigate how common they are, we initiated a survey of emission-line stars. Here, we focus on a sample of nine B[e] stars in different evolutionary phases. Emission of the [O I] lines is one of the characteristics of B[e] stars. We find that four of the objects display [Ca II] line emission: for the B[e] supergiants V1478 Cyg and 3 Pup, the kinematics obtained from the [O I] and [Ca II] line profiles agrees with a Keplerian rotating disc scenario; the forbidden lines of the compact planetary nebula OY Gem display no kinematical broadening beyond spectral resolution; the luminous blue variable candidate V1429 Aql shows no [O I] lines, but the profile of its [Ca II] lines suggests that the emission originates in its hot, ionized circumbinary disc. As none of the B[e] stars of lower mass displays [Ca II] line emission, we conclude that these lines are more likely observable in massive stars with dense discs, supporting and strengthening the suggestion that their appearance requires high-density environments.

  11. Registries Help Moms Measure Medication Risks

    MedlinePlus

    ... in the case of the North American Antiepileptic Drug Pregnancy Registry, which studies the effects of drugs for ... is taking. For example, the North American Antiepileptic Drug Pregnancy Registry website lists more than 30 medications being ...

  12. 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.

  13. Evaluation and implementation of public health registries.

    PubMed

    Solomon, D J; Henry, R C; Hogan, J G; Van Amburg, G H; Taylor, J

    1991-01-01

    A rapid proliferation of registries has occurred during the last 20 years. Given the long-term commitment of resources associated with registries and limited public health funding, proposals for new registries should be carefully considered before being funded. A registry is defined as a data base of identifiable persons containing a clearly defined set of health and demographic data collected for a specific public health purpose. Criteria for evaluating whether a registry is needed, feasible, or the most effective and efficient means of collecting a specific set of health data are presented. They include an evaluation of the stated purpose; a review of the function, duration, and scope of the registry; consideration of existing alternative data sources; an assessment of the practical feasibility of the registry; the likelihood of sufficient start-up and long-term funding; and an evaluation of the cost effectiveness of the registry. Creating a public health registry is a complex process. A range of technical and organizational skills is required for a registry to be successfully implemented. Eight requirements are identified as crucial for the successful development of a new registry. They include an implementation plan, adequate documentation, quality control procedures, case definition and case-finding (ascertainment) procedures, determination of data elements, data collection and processing procedures, data access policy, and a framework for dissemination of registry data and findings. PMID:1902306

  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. 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...

  16. 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

  17. A renal registry for Africa: first steps.

    PubMed

    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

    2016-02-01

    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.

  18. New registry: National Cancer Patient Registry--Colorectal Cancer.

    PubMed

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008. PMID:19230248

  19. New registry: National Cancer Patient Registry--Colorectal Cancer.

    PubMed

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008.

  20. 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

  1. 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.

  2. Medication adherence: WHO cares?

    PubMed

    Brown, Marie T; Bussell, Jennifer K

    2011-04-01

    The treatment of chronic illnesses commonly includes the long-term use of pharmacotherapy. Although these medications are effective in combating disease, their full benefits are often not realized because approximately 50% of patients do not take their medications as prescribed. Factors contributing to poor medication adherence are myriad and include those that are related to patients (eg, suboptimal health literacy and lack of involvement in the treatment decision-making process), those that are related to physicians (eg, prescription of complex drug regimens, communication barriers, ineffective communication of information about adverse effects, and provision of care by multiple physicians), and those that are related to health care systems (eg, office visit time limitations, limited access to care, and lack of health information technology). Because barriers to medication adherence are complex and varied, solutions to improve adherence must be multifactorial. To assess general aspects of medication adherence using cardiovascular disease as an example, a MEDLINE-based literature search (January 1, 1990, through March 31, 2010) was conducted using the following search terms: cardiovascular disease, health literacy, medication adherence, and pharmacotherapy. Manual sorting of the 405 retrieved articles to exclude those that did not address cardiovascular disease, medication adherence, or health literacy in the abstract yielded 127 articles for review. Additional references were obtained from citations within the retrieved articles. This review surveys the findings of the identified articles and presents various strategies and resources for improving medication adherence.

  3. Adherence to Insulin Therapy.

    PubMed

    Sarbacker, G Blair; Urteaga, Elizabeth M

    2016-08-01

    IN BRIEF Six million people with diabetes use insulin either alone or in combination with an oral medication. Many barriers exist that lead to poor adherence with insulin. However, there is an underwhelming amount of data on interventions to address these barriers and improve insulin adherence. Until pharmacological advancements create easier, more acceptable insulin regimens, it is imperative to involve patients in shared decision-making. PMID:27574371

  4. Evaluation of institutional cancer registries in Colombia.

    PubMed

    Cuervo, L G; Roca, S; Rodríguez, M N; Stein, J; Izquierdo, J; Trujillo, A; Mora, M

    1999-09-01

    The four primary objectives of this descriptive study were to: 1) design a quality-measurement instrument for institutional cancer registries (ICRs), 2) evaluate the existing ICRs in Colombia with the designed instrument, 3) categorize the different registries according to their quality and prioritize efforts that will efficiently promote better registries with the limited resources available, and 4) determine the institution with the greatest likelihood of successfully establishing Colombia's second population-based cancer registry. In 1990 the National Cancer Institute of Colombia developed 13 institution-based cancer registries in different Colombian cities in order to promote the collection of data from a large group of cancer diagnostic and treatment centers. During the first half of 1997, this evaluation reviewed 12 registries; one of the original 13 no longer existed. All of the Colombian institutions (hospitals) that maintain institution-based cancer registries were included in the study. At each institution, a brief survey was administered to the hospital director, the registry coordinator, and the registrar (data manager). Researchers investigated the institutions by looking at six domains that are in standard use internationally. Within each domain, questions were developed and selected through the Delphi method. Each domain and each question were assigned weights through a consensus process. In most cases, two interviewers went to each site to collect the information. The university hospitals in Cali, Pereira, and Medellín had substantially higher scores, reflecting a good level of performance. Four of the 12 institutions had almost no cancer registry work going on. Five of the 12 hospital directors considered that the information provided by the cancer registries influenced their administrative decisions. Three of the registries had patient survival data. Four of the institutions allocated specific resources to operate their cancer registries; in the

  5. [Current registry studies of acute ischemic stroke].

    PubMed

    Veltkamp, R; Jüttler, E; Pfefferkorn, T; Purrucker, J; Ringleb, P

    2012-10-01

    Study registries offer the opportunity to evaluate the effects of new therapies or to observe the consequences of new treatments in clinical practice. The SITS-MOST registry confirmed the validity of findings from randomized trials on intravenous thrombolysis concerning safety and efficacy in the clinical routine. Current study registries concerning new interventional thrombectomy techniques suggest a high recanalization rate; however, the clinical benefit can only be evaluated in randomized, controlled trials. Similarly, the experiences of the BASICS registry on basilar artery occlusion have led to the initiation of a controlled trial. The benefit of hemicraniectomy in malignant middle cerebral artery infarction has been demonstrated by the pooled analysis of three randomized trials. Numerous relevant aspects are currently documented in the DESTINY-R registry. Finally, the recently started RASUNOA registry examines diagnostic and therapeutic aspects of ischemic and hemorrhagic stroke occurring during therapy with new oral anticoagulants.

  6. eXtended MetaData Registry

    2006-10-25

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

  7. Patient registries: utility, validity and inference.

    PubMed

    Richesson, Rachel; Vehik, Kendra

    2010-01-01

    Patient registries are essential tools for public health surveillance and research inquiry, and are a particularly important resource for understanding rare diseases. Registries provide consistent data for defined populations and can support the study of the distribution and determinants of various diseases. One advantage of registries is the ability to observe caseload and population characteristics over time, which might facilitate the evaluation of disease incidence, disease etiology, planning, operation and evaluation of services, evaluation of treatment patterns, and diagnostic classification. Any registry program must collect high quality data to be useful for its stated purpose. Registries can be developed for many different needs, and caution should be taken in interpreting registry data, which has inherent biases. We describe the methodological issues, limitations, and ideal features of registries to support various rare disease purposes. The future impact of registries on our understanding and interventions for rare diseases will depend upon technological and political solutions for global cooperation to achieve consistent data (via standards) and regulations for various registry applications.

  8. 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.

  9. Adherence to Sublingual Immunotherapy.

    PubMed

    Incorvaia, Cristoforo; Mauro, Marina; Leo, Gualtiero; Ridolo, Erminia

    2016-02-01

    Adherence is a major issue in any medical treatment. Allergen immunotherapy (AIT) is particularly affected by a poor adherence because a flawed application prevents the immunological effects that underlie the clinical outcome of the treatment. Sublingual immunotherapy (SLIT) was introduced in the 1990s, and the early studies suggested that adherence and compliance to such a route of administration was better than the traditional subcutaneous route. However, the recent data from manufacturers revealed that only 13% of patients treated with SLIT reach the recommended 3-year duration. Therefore, improved adherence to SLIT is an unmet need that may be achieved by various approaches. The utility of patient education and accurate monitoring during the treatment was demonstrated by specific studies, while the success of technology-based tools, including online platforms, social media, e-mail, and a short message service by phone, is currently considered to improve the adherence. This goal is of pivotal importance to fulfill the object of SLIT that is to modify the natural history of allergy, ensuring a long-lasting clinical benefit, and a consequent pharmaco-economic advantage, when patients complete at least a 3-year course of treatment. PMID:26758865

  10. National Suicide Registry Malaysia (NSRM).

    PubMed

    Hayati, A N; Kamarul, A K

    2008-09-01

    To create a nationwide system to capture data on completed suicide in Malaysia i.e. the morbidity, geographic and temporal trends and the population at high risk of suicide. Data from this registry can later be used to stimulate and facilitate further research on suicide. This paper describes the rationale and processes involved in developing a national suicide registry in 2007. The diagnosis of suicide is based on the ICD-10 codes for fatal intentional self-harm (X60-X84). A case report form with an accompanying instruction manual had been prepared to ensure systematic and uniform data collection. State Forensic Pathologist's offices are responsible for data collection in their respective states, and in turn will submit the data to a central data management unit. Data collection began in July 2007 and currently in data cleaning process. Training for source data producers is ongoing. In 2008, the NSRM plans to involve university hospitals into its network as currently only Ministry of Health hospitals are involved. The NSRM will be launching its online application for case registration this year while an overview of results will be available via its public domain at www.nsrm.gov.my beginning 20 April 2008. To efficiently capture the data on suicide, a concerted effort between various agencies is needed. A lot of conceptual work and data base development remains to be done in order to position preventive efforts on a more solid foundation. PMID:19227674

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

    PubMed

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

    2011-08-01

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

  12. 78 FR 19716 - International Consortium of Cardiovascular Registries

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-04-02

    ... HUMAN SERVICES Food and Drug Administration International Consortium of Cardiovascular Registries AGENCY... of Cardiovascular Registries.'' The purpose of this meeting is to discuss the development of an international consortium of cardiovascular registries with a broad array of interested stakeholders. The...

  13. 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...

  14. [Local registries in general/family practice].

    PubMed

    Cindrić, Jasna

    2007-02-01

    Entering medical records into registries of all sorts has always been a part of everyday work of a general/family physician. There is a distinction between public/population registries on the one hand, and internal, local registries on the other hand. Local registries refer to the catchment population of a particular general/family practice. While keeping population-registries has become a routine with a high level of uniformity in collecting, delivering, recording, analyzing and controlling information, there are no recommendations or standards for keeping local registries, although their importance as well as indisputable necessity have been recognized. They are invaluable for providing an insight into the condition and history of a particular disease in a particular area, planning and taking preventive measures and activities, supervising therapy and medical treatment, as well as for statistical analyses and scientific studies. The most important registry in the field of general practice is the one called "List of health care under the supervision of chosen general/family physicians", which can serve as an index for any other individual record or record of diseases by name kept at a particular general/family practice. Although local registries have "evolved" from notebooks into modern informatic databases, the problem of up-to-dateness cannot be solved until the whole health care system has been connected for competent and authorized persons to be able to record changes of data where and when they take place.

  15. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  16. The importance of registries in cancer control.

    PubMed

    Leal, Yelda A; Fernández-Garrote, Leticia M; Mohar-Betancourt, Alejandro; Meneses-García, Abelardo

    2016-04-01

    Cancer is one of the major causes of morbidity and mortality in the world, with 14.1 million new cases and 8.2 million deaths annually. A marked disparity exists between developed countries and developing countries, with 57% of new cases and 65% of deaths in 2012 occurring in developing countries. This global picture can only be obtained because of data obtained from population-based cancer registries, which allow cancer estimations for different geographic areas. Our objective is to perform a review of different types of registries and their role in the control of cancer. These types of registries are lacking in developing countries. In Central and South America, only 6% of the population is included in cancer registries versus 83% in North America. It is necessary to increase the coverage of cancer registries to obtain more reliable data that will more appropriately guide control programs. PMID:27557391

  17. 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

  18. Adherence to treatment in adolescents

    PubMed Central

    Taddeo, Danielle; Egedy, Maud; Frappier, Jean-Yves

    2008-01-01

    Health care professionals must be alert to the high prevalence of low adherence to treatment during adolescence. Low adherence increases morbidity and medical complications, contributes to poorer quality of life and an overuse of the health care system. Many different factors have an impact on adherence. However, critical factors to consider in teens are their developmental stage and challenges, emotional issues and family dysfunction. Direct and indirect methods have been described to assess adherence. Eliciting an adherence history is the most useful way for clinicians to evaluate adherence, and could be the beginning of a constructive dialogue with the adolescent. Interventions to improve adherence are multiple – managing mental health issues appropriately, building a strong relationship, customizing the treatment regimen if possible, empowering the adolescent to deal with adherence issues, providing information, ensuring family and peer support, and motivational enhancement therapy. Evaluation of adherence at regular intervals should be an important aspect of health care for adolescents. PMID:19119348

  19. A White Light Megaflare on the dM4.5e Star YZ CMi

    NASA Astrophysics Data System (ADS)

    Kowalski, Adam F.; Hawley, Suzanne L.; Holtzman, Jon A.; Wisniewski, John P.; Hilton, Eric J.

    2010-05-01

    On UT 2009 January 16, we observed a white light megaflare on the dM4.5e star YZ CMi as part of a long-term spectroscopic flare-monitoring campaign to constrain the spectral shape of optical flare continuum emission. Simultaneous U-band photometric and 3350-9260 Å spectroscopic observations were obtained during 1.3 hr of the flare decay. The event persisted for more than 7 hr and at flare peak, the U-band flux was almost 6 mag brighter than in the quiescent state. The properties of this flare mark it as one of the most energetic and longest-lasting white light flares ever to be observed on an isolated low-mass star. We present the U-band flare energetics and a flare continuum analysis. For the first time, we show convincingly with spectra that the shape of the blue continuum from 3350 Å to 4800 Å can be represented as a sum of two components: a Balmer continuum as predicted by the Allred et al. radiative hydrodynamic flare models and a T~ 10,000 K blackbody emission component as suggested by many previous studies of the broadband colors and spectral distributions of flares. The areal coverage of the Balmer continuum and blackbody emission regions vary during the flare decay, with the Balmer continuum emitting region always being significantly (~3-16 times) larger. These data will provide critical constraints for understanding the physics underlying the mysterious blue continuum radiation in stellar flares. Based on observations obtained with the Apache Point Observatory 3.5 m Telescope, which is owned and operated by the Astrophysical Research Consortium.

  20. 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

  1. 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

  2. The VLT-FLAMES Tarantula Survey. XV. VFTS 822: A candidate Herbig B[e] star at low metallicity

    NASA Astrophysics Data System (ADS)

    Kalari, V. M.; Vink, J. S.; Dufton, P. L.; Evans, C. J.; Dunstall, P. R.; Sana, H.; Clark, J. S.; Ellerbroek, L.; de Koter, A.; Lennon, D. J.; Taylor, W. D.

    2014-04-01

    We report the discovery of the B[e] star VFTS 822 in the 30 Doradus star-forming region of the Large Magellanic Cloud, classified by optical spectroscopy from the VLT-FLAMES Tarantula Survey and complementary infrared photometry. VFTS 822 is a relatively low-luminosity (log L = 4.04 ± 0.25 L⊙) B8[e] star. In this Letter, we evaluate the evolutionary status of VFTS 822 and discuss its candidacy as a Herbig B[e] star. If the object is indeed in the pre-main sequence phase, it would present an exciting opportunity to spectroscopically measure mass accretion rates at low metallicity, to probe the effect of metallicity on accretion rates. Based on the observations at the European Southern Observatory Very Large Telescope in programme 182.D-0222.Table 1 and Fig. 4 are available in electronic form at http://www.aanda.orgFinal reduced FLAMES spectra are only available at the CDS via anonymous ftp to http://cdsarc.u-strasbg.fr (ftp://130.79.128.5) or via http://cdsarc.u-strasbg.fr/viz-bin/qcat?J/A+A/564/L7

  3. Implementation of a Comprehensive Orthopaedic Registry System.

    PubMed

    Tokish, John M; Alexander, Thomas C

    2016-01-01

    Advances in information technology have allowed for improvements in the collection and analysis of large-scale outcomes data. These data can be used in the practice of orthopaedics for benchmarking, value analysis, and comparative effectiveness research. The implementation of registries within a busy surgical practice can be challenging, costly, and inefficient. Content, platform, and characteristics are the key elements required to successfully implement a patient-based orthopaedic outcomes data registry. Specific barriers to implementing registries are discussed, and solutions are proposed, to provide an example for optimal integration within clinical practices that may have varying goals.

  4. 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

  5. 75 FR 65629 - Modification of the Annual National Registry Fee

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-26

    ... INSTITUTIONS EXAMINATION COUNCIL Modification of the Annual National Registry Fee AGENCY: Appraisal... the annual National Registry fee to $40. SUMMARY: Under authority in the Dodd-Frank Wall Street Reform... Registry fee (Registry fee) to $40 from the current $25 amount at its meeting on October 13, 2010. The...

  6. 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...

  7. 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...

  8. 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...

  9. 20 CFR 655.34 - Electronic job registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

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

  10. 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...

  11. 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...

  12. 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...

  13. The Italian registry of soft tissue tumors.

    PubMed

    Clemente, C; Orazi, A; Rilke, F

    1988-01-01

    After a review of the incidence data on malignant soft-tissue tumors in Italy (Registro dei Tumori della Regione Lombardia, provincia di Varese), Europe (nine European Cancer Registries considered representative of various geographical areas) and extra-European countries (data of ten World Cancer Registries), the aim and the organization of the Italian Malignant Soft-Tissue Tumor Registry are described. The collection system is based on dedicated forms prepared for the computerization of all data. From 1.1.1985 to 31.3.1987, 207 cases of malignant and potentially malignant soft-tissue tumors entered the Registry, with exclusion of those sarcomas arising in viscera. The distribution, categorized by histologic type, sex and site, and the preliminary results on relapses and metastases are reported.

  14. [Hoogendoorn and the medical registry].

    PubMed

    van Gijn, Jan; Gijselhart, Joost P

    2012-01-01

    Dirk Hoogendoorn (1914-1990) was a solo general practitioner in the village of Wijhe (eastern part of the Netherlands) from 1941, during the time of the German occupation, until 1971. From the very beginning, he combined his practice with the recording of disease patterns. He first concentrated on infectious diseases, especially whooping cough, which was the subject of his doctoral thesis. He later set up registries in two regional hospitals. When his initiative expanded to a national organisation, he became its advisor. He nonetheless continued to produce statistics on a variety of disorders as well as on surgical procedures, even more so after his retirement. The subjects ranged from traffic accidents and tonsillectomies to the discrepancy between increased body height and the unchanging height of the tennis net, but he had the most affinity with the practice of obstetrics. He stirred up much emotion by showing that a decrease in perinatal mortality was proceeding slower in the Netherlands than in other European countries, especially by suggesting a causal relationship between this lag and the high rate of Dutch home deliveries. This debate has continued to this day. PMID:23075774

  15. 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

  16. Definition, epidemiology and registries of pulmonary hypertension.

    PubMed

    Awdish, R; Cajigas, H

    2016-05-01

    Pulmonary arterial hypertension (PAH) is a subcategory of pulmonary hypertension (PH) that comprises a group of disorders with similar pulmonary vascular pathology. Though PH is common, the estimated incidence of IPAH is 1-3 cases per million, making it a rare disease. The hemodynamic definition of PAH is a mean pulmonary artery pressure at rest >OR = 25 mm Hg in the presence of a pulmonary capillary wedge pressure registries. These registries have been indispensable in the characterization and mapping of the natural history of the disease. Equations and risk calculators derived from registries have given clinicians a basis for risk stratification and prognostication. The sequential accumulation of data since the registries began in the 1980s allows for comparisons to be made. Patients who are differentiated by treatment eras and environments can be contrasted. Variability among inclusion criteria similarly allows for comparisons of these subpopulations. This article provides an overview of available registries, highlights insights provided by each and discusses key issues around the interpretation and extrapolation of data from PAH registries. Registries have allowed us to appreciate the improvement in survival afforded by modern therapy and enhanced detection of this disease. Moving forward, a more global approach to registries is needed, as is enhanced collaboration and centralization.

  17. 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. PMID:10135140

  18. PCCR: Pancreatic Cancer Collaborative Registry.

    PubMed

    Sherman, Simon; Shats, Oleg; Ketcham, Marsha A; Anderson, Michelle A; Whitcomb, David C; Lynch, Henry T; Ghiorzo, Paola; Rubinstein, Wendy S; Sasson, Aaron R; Grizzle, William E; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E

    2011-01-01

    The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a "confederation model" that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches

  19. Materials Adherence Experiment: Technology

    SciTech Connect

    Jenkins, P.P.; Landis, G.A.; Oberle, L.G.

    1997-12-31

    NASA`s Mars Pathfinder mission, launched December 4, 1996, reflects a new philosophy of exploiting new technologies to reduce mission cost and accelerate the pace of space exploration. Pathfinder will demonstrate a variety of new technologies aimed at reducing the cost of Mars exploration. Chief among these will be the demonstration of a solar-powered spacecraft on the surface of Mars. The Materials Adherence Experiment on Pathfinder was designed to measure the degradation of solar arrays due to dust settling out of the atmosphere and blocking light to the solar array, lowering the array power output.

  20. Pulling on adhered vesicles

    NASA Astrophysics Data System (ADS)

    Smith, Ana-Suncana; Goennenwein, Stefanie; Lorz, Barbara; Seifert, Udo; Sackmann, Erich

    2004-03-01

    A theoretical model describing pulling of vesicles adhered in a contact potential has been developed. Two different regimes have been recognized. For weak to middle-strength adhesive potentials, locally stable shapes are found in a range of applied forces, separated from the free shape by an energy barrier. The phase diagram contains regions with either a unique bound shape or an additional meta-stable shape. Upon pulling, these shapes unbind discontinuously since the vesicle disengage from the surface while still possessing a finite adhesion area (Smith 2003a). In a strong adhesion regime, a competition between adhesion and tether formation is observed. A critical onset force is identified where a tether spontaneously appears as a part of a second order shape transition. Further growth of a tether is followed by a detachment process which terminates at a finite force when a vesicle continuously unbinds from the substrate (Smith 2003b). Both critical forces, as well as all shape parameters, are calculated as a function of the reduced volume and the strength of adhesive potential. Analogous experimental study has been performed where a vertical magnetic tweezers are used in combination with micro-interferometric and confocal techniques to reproduce the same symmetry as in the theoretical investigation. Giant vesicles are bound to the substrate by numerous specific bonds formed between ligands and receptors incorporated into the vesicle and the substrate, respectively. Application of a constant force is inducing a new thermodynamic equilibrium of the system where the vesicle is partially unbound from the substrate (Goennenwein 2003). The shapes of vesicles are compared prior and during application of the force. Very good agreement is obtained, particularly in the middle-strength adhesion regime (Smith 2003c). References: 1. A.-S. Smith, E. Sackmann, U. Seifert: Effects of a pulling force on the shape of a bound vesicle, Europhys. Lett., 64, 2 (2003). 2. A.-S. Smith

  1. 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

  2. The circumstellar environment and evolutionary state of the supergiant B[e] star Wd1-9

    NASA Astrophysics Data System (ADS)

    Clark, J. S.; Ritchie, B. W.; Negueruela, I.

    2013-12-01

    Context. Historically, supergiant (sg)B[e] stars have been difficult to include in theoretical schemes for the evolution of massive OB stars. Aims: The location of Wd1-9 within the coeval starburst cluster Westerlund 1 means that it may be placed into a proper evolutionary context and we therefore aim to utilise a comprehensive multiwavelength dataset to determine its physical properties and consequently its relation to other sgB[e] stars and the global population of massive evolved stars within Wd1. Methods: Multi-epoch R- and I-band VLT/UVES and VLT/FORS2 spectra are used to constrain the properties of the circumstellar gas, while an ISO-SWS spectrum covering 2.45-45 μm is used to investigate the distribution, geometry and composition of the dust via a semi-analytic irradiated disk model. Radio emission enables a long term mass-loss history to be determined, while X-ray observations reveal the physical nature of high energy processes within the system. Results: Wd1-9 exhibits the rich optical emission line spectrum that is characteristic of sgB[e] stars. Likewise its mid-IR spectrum resembles those of the LMC sgB[e] stars R66 and 126, revealing the presence of equatorially concentrated silicate dust, with a mass of ~10-4 M⊙. Extreme historical and ongoing mass loss (≳10-4 M⊙ yr-1) is inferred from the radio observations. The X-ray properties of Wd1-9 imply the presence of high temperature plasma within the system and are directly comparable to a number of confirmed short-period colliding wind binaries within Wd1. Conclusions: The most complete explanation for the observational properties of Wd1-9 is that it is a massive interacting binary currently undergoing, or recently exited from, rapid Roche-lobe overflow, supporting the hypothesis that binarity mediates the formation of (a subset of) sgB[e] stars. The mass loss rate of Wd1-9 is consistent with such an assertion, while viable progenitor and descendent systems are present within Wd1 and comparable sg

  3. 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. PMID:26843968

  4. ISHKS joint registry: A preliminary report

    PubMed Central

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

    2013-01-01

    Background: Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are the most widely practiced surgical options for arthritis all over the world and its application is rising in India. Indian Society of Hip and Knee Surgeons (ISHKS) has established a joints registry and has been collecting data for last 6 years. Materials & Methods: All members of ISHKS are encouraged to actively participate in the registry. A simple two page knee and hip form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Results: Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25%) and 25,866 females (75%). Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years). Average body mass index was 29.1 (Range: 18.1 to 42.9). The indication for TKA was osteoarthritis in 33,444 (97%) and rheumatoid arthritis in 759 (2.2%). Total of 3604 THA procedures were recorded. These included 2162 (60%) male patients and 1442 (40%) female patients. Average age was 52 years (Range 17 to 85 years) and average BMI was 25.8 (Range: 17.3 to 38.5). The indications for THA was AVN in 49%. Conclusion: The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry. PMID:24133312

  5. 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 Central

    Zeeneldin, Ahmed A.; Taha, Fatma M.

    2015-01-01

    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. PMID:26843968

  6. 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.

  7. Highly ionized stellar winds in Be stars. II - Winds in B6-B9.5e stars

    NASA Technical Reports Server (NTRS)

    Grady, C. A.; Sonneborn, George; Bjorkman, K. S.; Snow, T. P.; Shore, Steven N.

    1989-01-01

    The results of a UV survey of stellar winds and circumstellar shells in 40 B6-B9.5e stars covering luminosity classes V-III are presented. A graph is presented of the region from 1520-1560 A, which includes both the Si II UV multiplet 2 transitions and the C IV resonance transition for selected Be stars in the sample. The detection of shortward-shifted discrete component absorption features in nine of the program stars suggests that the material is produced in a stellar wind, which attains velocities of at least a few hundred km/s.

  8. The National Mental Health Registry (NMHR).

    PubMed

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

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports. PMID:19227671

  9. The National Mental Health Registry (NMHR).

    PubMed

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

    2008-09-01

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

  10. Vascular surgical data registries for small computers.

    PubMed

    Kaufman, J L; Rosenberg, N

    1984-08-01

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

  11. [Considerations on limits and profits of registries].

    PubMed

    Addis, Antonio; Costa, Enrico; De Palma, Rossana; Magrini, Nicola; Marata, Anna Maria; Martelli, Luisa; Papini, Donato; Traversa, Giuseppe

    2015-09-01

    The article collects the summary of the discussion occurred in the setting of PRIER II, in the session dedicated to the taxonomy of registries. Shown below, some specific contributions by health professionals working at the regional departments, which deal with registries, as well as the contribution on the same subject by specialists working at some pharmaceutical companies. In particular, after the presentation summarized in the article by prof. Giuseppe Costa1, the contributions, respectively by a representative of the Emilia-Romagna Region, of a health and hospital service and by the PRIER II workgroup, are following. Finally, a collective work with all participants to the working group took place to focus on all the issues considered to be crucial in defining clinical registries. At the same discussion table, institutional representatives of the regulatory national and regional branch were also invited to take into consideration the points of view of all public and private registry users, in particular in their benefits, limits and purposes. Going through the discussion on a specific check list and deepening a number of statements identified by the working group, a list of key points, essential to characterize each clinical registry, was produced. PMID:26418504

  12. 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

  13. US Beryllium Case Registry through 1977

    SciTech Connect

    Sprince, N.L.; Kazemi, H.

    1980-02-01

    A synopsis of the cases reported to the Beryllium Case Registry between 1973 and 1977 is presented. As of 1973, there were 832 cases of beryllium disease entered into the Registry. In the five years since that report, 55 additional cases have been added, 40 men and 15 women. Exposures occured in the electronics and nuclear industries in the production and use of beryllium containing alloys and beryllium oxide ceramis. Pathological changes in the lung tissue are described. Cases continue to be reported in which the diagnosis was sarcoidosis until the history of beryllium exposure led to the finding of beryllium in the lung tissue or mediastinal lymph node biopsy. Data from the Registry support the fact that chronic beryllium disease is a continued occupational hazard.

  14. Irish National Joint Registry: a concept.

    PubMed

    Oduwole, K O; Codd, M B; Byrne, F; O'Byrne, J; Kenny, P J

    2008-12-01

    Despite the well-documented benefits, some countries have yet to agree on the establishment of a national joint register. A questionnaire study was undertaken to ascertain the opinions of the consultant orthopaedic surgeons and specialist registrars, regarding establishment of an Irish National Joint Register. The aim was to find out the possible reasons why a national joint register has not been established in Ireland. A 69% first response rate was recorded. Ninety-seven percent believe it is time to set up a registry and 81% say it should be made compulsory for unwilling surgeons and hospitals to participate. Despite the overwhelming support, privacy and liability issues were major concerns. Fifty-eight percent agree that access to registry report by general public can expose surgeons and hospitals to medico-legal implications. Legislation may be required to protect the integrity of a national joint replacement registry to ensure that the data are used as intended.

  15. 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

  16. MPC-polymer reduces adherence and biofilm formation by oral bacteria.

    PubMed

    Hirota, K; Yumoto, H; Miyamoto, K; Yamamoto, N; Murakami, K; Hoshino, Y; Matsuo, T; Miyake, Y

    2011-07-01

    Oral biofilms such as dental plaque cause dental caries and periodontitis, as well as aspiration pneumonia and infectious endocarditis by translocation. Hence, the suppression of oral biofilm formation is an issue of considerable importance. Mechanical removal, disinfectants, inhibition of polysaccharide formation, and artificial sugar have been used for the reduction of oral biofilm. From the viewpoint of the inhibition of bacterial adherence, we investigated whether aqueous biocompatible 2-methacryloyloxyethyl phosphorylcholine (MPC)-polymer can reduce streptococcal colonization and biofilm formation. We examined the effects of MPC-polymer on streptococcal adherence to saliva-coated hydroxyapatite and oral epithelial cells, and the adherence of Fusobacterium nucleatum to streptococcal biofilm. MPC-polymer application markedly inhibited both the adherence and biofilm formation of Streptococcus mutans on saliva-coated hydroxyapatite and streptococcal adherence to oral epithelial cells, and reduced the adherence of F. nucleatum to streptococcal biofilms. A small-scale clinical trial revealed that mouthrinsing with MPC-polymer inhibited the increase of oral bacterial numbers, especially of S. mutans. These findings suggest that MPC-polymer is a potent inhibitor of bacterial adherence and biofilm development, and may be useful to prevent dental-plaque-related diseases. (UMIN Clinical Trial Registry UMIN000003471).

  17. The Nigerian Twin and Sibling Registry.

    PubMed

    Hur, Yoon-Mi; Kim, Jong Woo; Chung, Kee Wha; Shin, Joong Sik; Jeong, Hoe-Uk; Auta, Emmanuel

    2013-02-01

    Twin studies of Africans have been scarce although Africans have shown the highest twin birth rate in the world. As a parallel study of the South Korean Twin Registry, the Nigerian Twin and Sibling Registry (NTSR) was developed to understand causal influences on the development of cognitive abilities, personality, and mental health among Nigerians. Currently, 1,134 twins and 404 full- and half-siblings have been registered with NTSR. This article describes research background, goals, major recruitment strategies, measures, and future directions of the NTSR.

  18. 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

  19. 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…

  20. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 5 2010-10-01 2010-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  1. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 5 2011-10-01 2011-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  2. 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... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  3. 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... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  4. 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... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  5. [Cancer registry of laryngectomized persons in Croatia].

    PubMed

    Pavlić, Blazenka

    2014-03-01

    Cancer poses a major problem in the population of Croatia. Owing to Professor Zivko Kulcar, who founded Cancer Registry at the Institute of Public Health in 1959, statistical data on patients with malignant cancer, including information on the entire territory of the Republic of Croatia, are available. The Act on Official Statistics (Official Gazette 103/2003) and Annual Implementation Plan regulate data recording in Cancer Registry, which is performed by the County Public Health Institutes that control the volume and quality of registration, after which the information is forwarded to the Croatian National Public Health Institute. If information and statistical data are needed for public health or scientific research purposes, one should approach Cancer Registry, having previously filled out a form for aggregated or individual information. However, when requesting information about individuals having undergone laryngectomy, such information is not available. If information about individuals having undergone laryngectomy is needed, e.g., how many of such individuals there are out there, when, where and how they are treated, or their demographic characteristics, such information unfortunately is not available. Therefore, establishment of the registry of patients who have undergone laryngectomy is proposed, which would be maintained by nurses working at ENT departments. PMID:24979893

  6. Registries in systemic sclerosis: a worldwide experience.

    PubMed

    Galluccio, Felice; Walker, Ulrich A; Nihtyanova, Svetlana; Moinzadeh, Pia; Hunzelmann, Nicholas; Krieg, Thomas; Steen, Virginia; Baron, Murray; Sampaio-Barros, Percival; Kayser, Cristiane; Nash, Peter; Denton, Chris P; Tyndall, Alan; Müller-Ladner, Ulf; Matucci-Cerinic, Marco

    2011-01-01

    SSc is a multisystem disease characterized by an unpredictable course, high mortality and resistance to therapy. The complexity and severity of SSc is a growing burden on the health-care systems. As a result, researchers are seeking new therapeutic strategies for effectively managing these patients. Disease registries are used to support care management efforts for groups of patients with chronic diseases and are meaningful to capture and track key patient information to assist the physicians in managing patients. For these reasons, SSc surveys, research associations and consortiums are pivotal to conduct ongoing research and data collection to enhance disease knowledge and support research projects. Currently, there are several national SSc registries in the UK, Germany, USA, Canada, Brazil and Australia. There is also an international registry established by the European League Against Rheumatism scleroderma trial and research (EUSTAR) called minimal essential data set (MEDS) Online, which collects data from over 8000 patients from 92 centres worldwide, including 21 European centres and 9 centres outside Europe. By collecting, analysing and disseminating data on disease progression and patient responses to long-term disease management strategies, registries help to improve understanding of the disease and keep medical professionals up to date on the latest advances. PMID:21148153

  7. The Savant Syndrome Registry: A Preliminary Report.

    PubMed

    Treffert, Darold A; Rebedew, David L

    2015-08-01

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

  8. The Savant Syndrome Registry: A Preliminary Report.

    PubMed

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills. PMID:26436185

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

    PubMed Central

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

    2009-01-01

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

  10. 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... SOCIOECONOMIC PROGRAMS OTHER SOCIOECONOMIC PROGRAMS Disaster or Emergency Assistance Activities 26.205 Disaster Response Registry. (a) Contracting officers shall consult the Disaster Response Registry at www.ccr.gov...

  11. 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... SOCIOECONOMIC PROGRAMS OTHER SOCIOECONOMIC PROGRAMS Disaster or Emergency Assistance Activities 26.205 Disaster Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via...

  12. 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... SOCIOECONOMIC PROGRAMS OTHER SOCIOECONOMIC PROGRAMS Disaster or Emergency Assistance Activities 26.205 Disaster Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via...

  13. 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...

  14. 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...

  15. 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...

  16. 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... SOCIOECONOMIC PROGRAMS OTHER SOCIOECONOMIC PROGRAMS Disaster or Emergency Assistance Activities 26.205 Disaster Response Registry. (a) Contracting officers shall consult the Disaster Response Registry via...

  17. 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...

  18. 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... SOCIOECONOMIC PROGRAMS OTHER SOCIOECONOMIC PROGRAMS Disaster or Emergency Assistance Activities 26.205 Disaster Response Registry. (a) Contracting officers shall consult the Disaster Response Registry at www.ccr.gov...

  19. 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...

  20. 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...

  1. 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.,...

  2. 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.,...

  3. 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.,...

  4. 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.,...

  5. 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.,...

  6. Ankylosing spondylitis clinical registries: principles, practices and possibilities.

    PubMed

    Caplan, Liron; Clegg, Daniel O; Inman, Robert D

    2013-06-01

    The need for a rigorously developed longitudinal registry of patients with spondyloarthritis (SpA) is clear and urgent. Like randomized controlled trials, registries rely on a prospective, systematic protocol-driven approach to data acquisition to assess outcomes for a prescribed cohort of patients. Registries seek to capture large numbers of patients across large geographic zones and can serve as a valuable resource for patient advocacy, patient education and support, incidence and prevalence, and broad demographic profiles. Building on 3 existing registries--the Prospective Study of Outcomes in Ankylosing Spondylitis, the Program to Understand the Longterm Outcomes of Spondyloarthritis (PULSAR) and the University Health Network Spondyloarthritis Program--these registries and the Spondylitis Association of America propose to form a combined registry of North American SpA patients. The combined registry would, ideally, complement ongoing clinical goals and improve patient care. PMID:23841118

  7. 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.

  8. 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

  9. 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. PMID:26539470

  10. 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.

  11. A statewide cancer registry: the Pennsylvania experience.

    PubMed

    Powell, R L; Dietrich, R J

    1990-12-01

    Pennsylvania has been successful in establishing a statewide cancer registry. The success of this registry results from the efforts of many different groups. The program has benefited from strong legislation making cancer a reportable disease and assigning the responsibility of reporting to hospitals. The PCR has implemented many initiatives to ensure that the cooperation of hospitals in operating the system is maintained, and that there is sufficient knowledge among hospital personnel to ensure complete casefinding. As the amount of statewide incidence data is increased over several years, the utility of these data for program planning and epidemiologic studies will increase greatly. The establishment and ongoing operation of the PCR ensure that cancer incidence data are available in providing answers to questions such as some of those asked following the accident at Three Mile Island. PMID:10108500

  12. The Lupus Family Registry and Repository

    PubMed Central

    Rasmussen, Astrid; Sevier, Sydney; Kelly, Jennifer A.; Glenn, Stuart B.; Aberle, Teresa; Cooney, Carisa M.; Grether, Anya; James, Ellen; Ning, Jared; Tesiram, Joanne; Morrisey, Jean; Powe, Tiny; Drexel, Mark; Daniel, Wes; Namjou, Bahram; Ojwang, Joshua O.; Nguyen, Kim L.; Cavett, Joshua W.; Te, Jeannie L.; James, Judith A.; Scofield, R. Hal; Moser, Kathy; Gilkeson, Gary S.; Kamen, Diane L.; Carson, Craig W.; Quintero-del-Rio, Ana I.; Ballesteros, Maria del Carmen; Punaro, Marilynn G.; Karp, David R.; Wallace, Daniel J.; Weisman, Michael; Merrill, Joan T.; Rivera, Roberto; Petri, Michelle A.; Albert, Daniel A.; Espinoza, Luis R.; Utset, Tammy O.; Shaver, Timothy S.; Arthur, Eugene; Anaya, Juan-Manuel; Bruner, Gail R.

    2011-01-01

    The Lupus Family Registry and Repository (LFRR) was established with the goal of assembling and distributing materials and data from families with one or more living members diagnosed with SLE, in order to address SLE genetics. In the present article, we describe the problems and solutions of the registry design and biometric data gathering; the protocols implemented to guarantee data quality and protection of participant privacy and consent; and the establishment of a local and international network of collaborators. At the same time, we illustrate how the LFRR has enabled progress in lupus genetics research, answering old scientific questions while laying out new challenges in the elucidation of the biologic mechanisms that underlie disease pathogenesis. Trained staff ascertain SLE cases, unaffected family members and population-based controls, proceeding in compliance with the relevant laws and standards; participant consent and privacy are central to the LFRR’s effort. Data, DNA, serum, plasma, peripheral blood and transformed B-cell lines are collected and stored, and subject to strict quality control and safety measures. Coded data and materials derived from the registry are available for approved scientific users. The LFRR has contributed to the discovery of most of the 37 genetic associations now known to contribute to lupus through 104 publications. The LFRR contains 2618 lupus cases from 1954 pedigrees that are being studied by 76 approved users and their collaborators. The registry includes difficult to obtain populations, such as multiplex pedigrees, minority patients and affected males, and constitutes the largest collection of lupus pedigrees in the world. The LFRR is a useful resource for the discovery and characterization of genetic associations in SLE. PMID:20864496

  13. An active registry for bioinformatics web services

    PubMed Central

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J. C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    Summary: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their bioinformatics analysis tasks. Availability and implementation: Web site implemented with PHP, Python, MySQL and Apache, with all major browsers supported. (www.embraceregistry.net) Contact: steve.pettifer@manchester.ac.uk PMID:19460889

  14. Innovative Interventional and Imaging Registries: Precision Medicine in Cerebrovascular Disorders

    PubMed Central

    Liebeskind, David S.

    2015-01-01

    Background Precision medicine in cerebrovascular disorders may be greatly advanced by the use of innovative interventional and imaging-intensive registries. Registries have remained subsidiary to randomized controlled trials, yet vast opportunities exist to leverage big data in stroke. Summary This overview builds upon the rationale for innovative, imaging-intensive interventional registries as a pivotal step in realizing precision medicine for several cerebrovascular disorders. Such enhanced registries may serve as a model for expansion of our translational research pipeline to fully leverage the role of phase IV investigations. The scope and role of registries in precision medicine are considered, followed by a review on the history of stroke and interventional registries, data considerations, critiques or barriers to such initiatives, and the potential modernization of registry methods into efficient, searchable, imaging-intensive resources that simultaneously offer clinical, research and educational added value. Key Messages Recent advances in technology, informatics and endovascular stroke therapies converge to provide an exceptional opportunity for registries to catapult further progress. There is now a tremendous opportunity to deploy registries in acute stroke, intracranial atherosclerotic disease and carotid disease where other clinical trials leave questions unanswered. Unlike prior registries, imaging-intensive and modernized methods may leverage current technological capabilities around the world to efficiently address key objectives and provide added clinical, research and educational value. PMID:26600792

  15. Arizona Alzheimer's Registry: Strategy and Outcomes of a Statewide Research Recruitment Registry

    PubMed Central

    Saunders, K.T.; Langbaum, J.B.; Holt, C.J.; Chen, W.; High, N.; Langlois, C.; Sabbagh, M.; Tariot, P.N.

    2015-01-01

    BACKGROUND The Arizona Alzheimer's Consortium (AAC) created the Arizona Alzheimer's Registry, a screening and referral process for people interested in participating in Alzheimer's disease related research. The goals of the Registry were to increase awareness of Alzheimer's disease research and accelerate enrollment into AAC research studies. METHODS Participation was by open invitation to adults 18 and older. Those interested provided consent and completed a written questionnaire. A subset of Registrants underwent an initial telephone cognitive assessment. Referral to AAC sites was based on medical history, telephone cognitive assessment, and research interests. RESULTS A total of 1257 people consented and 1182 underwent an initial cognitive screening. Earned media (38.7%) was the most effective recruitment strategy. Participants had a mean age of 68.1 (SD 10.6), 97% were Caucasian, had 15.2 (SD 2.7) mean years of education, and 60% were female. 30% reported a family history of dementia and 70% normal cognition. Inter-rater agreement between self-reported memory status and the initial telephone cognitive assessment had a kappa of 0.31-0.43. 301 were referred to AAC sites. CONCLUSION IThe Registry created an infrastructure and process to screen and refer a high volume of eager Registrants. These methods were found to be effective at prescreening individuals for studies, which facilitated AAC research recruitment. The established infrastructure and experiences gained from the Registry have served as the prototype for the web-based Alzheimer's Prevention Registry, a national registry focusing on Alzheimer's disease prevention research. PMID:26491650

  16. 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.

  17. Factors that Influence Adherence to Antiretroviral Treatment in an Urban Population, Jakarta, Indonesia

    PubMed Central

    Weaver, Emma Rosamond Nony; Pane, Masdalina; Wandra, Toni; Windiyaningsih, Cicilia; Herlina; Samaan, Gina

    2014-01-01

    Introduction Although the number of people receiving antiretroviral therapy (ART) in Indonesia has increased in recent years, little is known about the specific characteristics affecting adherence in this population. Indonesia is different from most of its neighbors given that it is a geographically and culturally diverse country, with a large Muslim population. We aimed to identify the current rate of adherence and explore factors that influence ART adherence. Methods Data were collected from ART-prescribed outpatients on an HIV registry at a North Jakarta hospital in 2012. Socio-demographic and behavioral characteristics were explored as factors associated with adherence using logistics regression analyses. Chi squared test was used to compare the difference between proportions. Reasons for missing medication were analyzed descriptively. Results Two hundred and sixty-one patients participated, of whom 77% reported ART adherence in the last 3 months. The level of social support experienced was independently associated with adherence where some social support (p = 0.018) and good social support (p = 0.039) improved adherence compared to poor social support. Frequently cited reasons for not taking ART medication included forgetting to take medication (67%), busy with something else (63%) and asleep at medication time (60%). Discussion This study identified that an increase in the level of social support experienced by ART-prescribed patients was positively associated with adherence. Social support may minimize the impact of stigma among ART prescribed patients. Based on these findings, if social support is not available, alternative support through community-based organizations is recommended to maximize treatment success. PMID:25229671

  18. 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. PMID:26880512

  19. 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.

  20. [Influence of registries on the quality of care].

    PubMed

    Stengel, D; Dreinhöfer, K; Kostuj, T

    2016-06-01

    Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care. PMID:27164976

  1. An Update on the Florida State Twin Registry

    PubMed Central

    Taylor, Jeanette E.; Hart, Sara A.; Mikolajewski, Amy J.

    2012-01-01

    The Florida State Twin Registry began in 2002 through a pilot study of personality disorders and executive cognitive functioning in adult twins. Since 2006, the registry has grown substantially as part of the Learning Disability Research Center at Florida State University that recently began its second funding cycle through the National Institute of Child Health and Development. An update on the Florida State Twin Registry sample, focus, and measures is provided as well as future directions. PMID:23067863

  2. Observation and modelling of main-sequence star chromospheres - XII. Two-component model chromospheres for five active dM1e stars

    NASA Astrophysics Data System (ADS)

    Houdebine, E. R.

    2009-08-01

    We aim to constrain the Hα, CaII H and CaII K profiles from quiescent and active regions on active dM1e stars. A preliminary analysis of all the data available for dM1e stars shows that the Hα/CaII equivalent width (EW) ratio varies by up to a factor of 7 for different stars in our sample. We find that spectroscopic binaries have a significantly smaller ratio than single dM1e stars. We also find that the pre-main-sequence stars Gl 616.2, GJ 1264 and Gl 803 have a ratio lower than main-sequence single dM1e stars. These differences imply that different chromospheric structures are present on different stars, notably the temperature minimum must decrease with an increasing Hα/CaII EW ratio. For these reasons, it is impossible to reproduce all observations with only one grid of model chromospheres. We show that the grid of model chromospheres of Paper VI is adequate to describe the physical conditions that prevail in the chromospheres of spectroscopic binaries and pre-main-sequence M1e stars, but not for the conditions in single dM1e stars. One or more additional grids of model chromospheres will be necessary to reproduce all observations. We use the method developed in Paper XI in this series, in order to build two-component model chromospheres for five M1e field stars: FF And A, FF And B, GJ 1264, AU Mic and Gl 815A. Our solutions provide an exact match of the Hα and the mean CaII H & K EWs within measurement uncertainties. We compare the theoretical profiles and the observed profiles of Hα and the CaII H & K resonance lines. On the one hand, our fits to the CaII lines are reasonably good. On the other hand, our models tend to produce Hα profiles with a central absorption that is too deep. This suggests that the column mass at the transition region for plages is underestimated, but this would imply that the contrast factor between quiescent and active regions in the CaII lines is larger than 5. We find that, except in the cases of FF And A and AU Mic, the total

  3. The International Takotsubo Registry: Rationale, Design, Objectives, and First Results.

    PubMed

    Ghadri, Jelena-R; Cammann, Victoria L; Templin, Christian

    2016-10-01

    Takotsubo syndrome (TTS) was first described in Japan in 1990. The clinical presentation is similar to that of acute coronary syndrome (ACS). Cardiac enzymes are commonly elevated. A global initiative was launched and the InterTAK Registry was established to provide a systematic database. The major goals of the International Takotsubo Registry (InterTAK Registry) are to provide a comprehensive clinical characterization on natural history, treatment, and outcomes. We linked a biorepository to identify biomarkers for the diagnosis and prognosis and to investigate the genetic basis as well as disease-related factors. We focus on the rationale, objectives, design, and first results of the InterTAK Registry. PMID:27638029

  4. 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. PMID:12746948

  5. Improving Patient's Primary Medication Adherence

    PubMed Central

    Leguelinel-Blache, Géraldine; Dubois, Florent; Bouvet, Sophie; Roux-Marson, Clarisse; Arnaud, Fabrice; Castelli, Christel; Ray, Valérie; Kinowski, Jean-Marie; Sotto, Albert

    2015-01-01

    Abstract Quality of transitions of care is one of the first concerns in patient safety. Redesigning the discharge process to incorporate clinical pharmacy activities could reduce the incidence of postdischarge adverse events by improving medication adherence. The present study investigated the value of pharmacist counseling sessions on primary medication adherence after hospital discharge. This study was conducted in a 1844-bed hospital in France. It was divided in an observational period and an interventional period of 3 months each. In both periods, ward-based clinical pharmacists performed medication reconciliation and inpatient follow-up. In interventional period, initial counseling and discharge counseling sessions were added to pharmaceutical care. The primary medication adherence was assessed by calling community pharmacists 7 days after patient discharge. We compared the measure of adherence between the patients from the observational period (n = 201) and the interventional period (n = 193). The rate of patients who were adherent increased from 51.0% to 66.7% between both periods (P < 0.01). When discharge counseling was performed (n = 78), this rate rose to 79.7% (P < 0.001). The multivariate regression performed on data from both periods showed that age of at least 78 years old, and 3 or less new medications on discharge order were predictive factors of adherence. New medications ordered at discharge represented 42.0% (n = 1018/2426) of all medications on discharge order. The rate of unfilled new medications decreased from 50.2% in the observational period to 32.5% in the interventional period (P < 10−7). However, patients included in the observational period were not significantly more often readmitted or visited the emergency department than the patients who experienced discharge counseling during the interventional period (45.3% vs. 46.2%; P = 0.89). This study highlights that discharge counseling sessions are

  6. 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. PMID:27168721

  7. The Sri Lankan Twin Registry: 2012 update.

    PubMed

    Sumathipala, Athula; Siribaddana, Sisira; Hotopf, Mathew; McGuffin, Peter; Glozier, Nick; Ball, Harriet; Kovas, Yulia; Rijsdijk, Fruhling; Yatawara, Lalani; Pariante, Carmine; Zavos, Helena; Siriwardhana, Chesmal; Pannala, Gayani; Jayaweera, Kaushalya; Adikari, Anushka; Gunewardane, Dinesha

    2013-02-01

    The Sri Lankan Twin Registry (SLTR), established in 1997, is a unique resource for twin and genetic research in a low- and middle-income country (LMIC). It comprises of a volunteer cohort of 14,120 twins (7,060 pairs) and 119 sets of triplets, and a population-based cohort of 19,040 (9,520 pairs) twins and 89 sets of triplets. Several studies have been conducted using this registry, including the Colombo Twin and Singleton Study (CoTaSS 1; 4,387 twins, 2,311 singletons), which have explored the prevalence and heritability of a range of psychiatric disorders as well as gene-environmental interplay. Currently, a follow-up study (CoTaSS 2) of the same cohort is underway, looking at the prevalence and interrelationship of key cardiovascular and metabolic risk markers (e.g., metabolic syndrome). A significant feature of CoTaSS 2 is the establishment of a biobank. Current SLTR work is extending beyond mental health and the interface between mental and physical health to new horizons, extending collaborations with the wider global twin research community. Ethics and governance have been given special emphasis in the initiative. Capacity building and public engagement are two crucial components. Establishment of a state-of-the-art genetic laboratory was a major accomplishment. SLTR is a classic showcase of successful North-South partnership in building a progressive research infrastructure in a LMIC. PMID:23302519

  8. Haematuria on the Spanish Registry of Glomerulonephritis.

    PubMed

    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

  9. 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

  10. 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

  11. 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

  12. 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.

  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. Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

    PubMed

    Peterson, Jennifer

    2016-01-01

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

  15. 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

  16. Improving medication adherence in migraine treatment.

    PubMed

    Seng, Elizabeth K; Rains, Jeanetta A; Nicholson, Robert A; Lipton, Richard B

    2015-06-01

    Medication adherence is integral to successful treatment of migraine and other headache. The existing literature examining medication adherence in migraine is small, and the methodologies used to assess adherence are limited. However, these studies broadly suggest poor adherence to both acute and preventive migraine medications, with studies using more objective monitoring reporting lower adherence rates. Methods for improving medication adherence are described, including organizational strategies, provider-monitoring and self-monitoring of adherence, regimen strategies, patient education, self-management skills training (e.g., stimulus control, behavioral contracts), and cognitive-behavioral therapy techniques. The article concludes by discussing the future of research regarding adherence to medications for migraine and other headaches.

  17. 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.

  18. 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 established to implement recommendations included in the review of national saltwater angling data...

  19. 76 FR 28403 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ... of a National Registry of Certified Medical Examiners (National Registry), 73 FR 73129. The National... medical examiners about FMCSA's physical qualification standards. See 73 FR 73132-33. However, the Agency... Certified Medical Examiners ACTION: Notice of availability of draft guidance; request for comments....

  20. 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 Missouri…

  1. 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...

  2. 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...

  3. 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...

  4. 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...

  5. 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...

  6. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... procedures. (f) Effect of recordation. The Copyright Office will record statements in the Visual Arts... 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...

  7. 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...

  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, 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...

  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 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...

  12. 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...

  13. 76 FR 37064 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-24

    ... INFORMATION: The final rule implementing the National Saltwater Angler Registry Program, 50 CFR part 600, subpart P, was published in the Federal Register on December 30, 2008 (73 FR 79705). The final rule... National Oceanic and Atmospheric Administration RIN 0648-XA490 National Saltwater Angler Registry...

  14. 76 FR 4092 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-01-24

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF COMMERCE 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...

  15. 76 FR 22082 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-04-20

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF COMMERCE 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...

  16. 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... registration of anglers, spear fishers and for-hire fishing vessels to register under the National Saltwater... final rule implementing the National Saltwater Angler Registry Program, 50 CFR part 600, subpart P,...

  17. 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

  18. 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…

  19. 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.

  20. Symptom Patterns Among Gulf War Registry Veterans

    PubMed Central

    Hallman, William K.; Kipen, Howard M.; Diefenbach, Michael; Boyd, Kendal; Kang, Han; Leventhal, Howard; Wartenberg, Daniel

    2003-01-01

    Objectives. We identify symptom patterns among veterans who believe they suffer from Gulf War–related illnesses and characterize groups of individuals with similar patterns. Methods. A mail survey was completed by 1161 veterans drawn from the Gulf War Health Registry. Results. An exploratory factor analysis revealed 4 symptom factors. A K-means cluster analysis revealed 2 groups: (1) veterans reporting good health and few moderate/severe symptoms, and (2) veterans reporting fair/poor health and endorsing an average of 37 symptoms, 75% as moderate/severe. Those in Cluster 2 were more likely to report having 1 or more of 24 medical conditions. Conclusions. These findings are consistent with previous investigations of symptom patterns in Gulf War veterans. This multisymptom illness may be more fully characterized by the extent, breadth, and severity of symptoms reported. PMID:12660208

  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. The Twin Research Registry at SRI International.

    PubMed

    Krasnow, Ruth E; Jack, Lisa M; Lessov-Schlaggar, Christina N; Bergen, Andrew W; Swan, Gary E

    2013-02-01

    The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same- and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples. PMID:23084148

  3. Australian Twin Registry: 30 years of progress.

    PubMed

    Hopper, John L; Foley, Debra L; White, Paul A; Pollaers, Vincent

    2013-02-01

    The Australian Twin Registry (ATR) is a national volunteer resource of twin pairs and higher-order multiples willing to consider participating in health, medical, and scientific research. The vision of the ATR is 'to realize the full potential of research involving twins to improve the health and well-being of all Australians'. The ATR has been funded continuously by the National Health and Medical Council for more than 30 years. Its core functions entail the recruitment and retention of twin members, the maintenance of an up-to-date database containing members' contact details and baseline information, and the promotion and provision of open access to researchers from all institutes in Australia, and their collaborators, in a fair and equitable manner. The ATR is administered by The University of Melbourne, which acts as custodian. Since the late 1970s the ATR has enrolled more than 40,000 twin pairs of all zygosities and facilitated more than 500 studies that have produced at least 700 peer-reviewed publications from classical twin studies, co-twin control studies, within-pair comparisons, twin family studies, longitudinal twin studies, randomized controlled trials, and epigenetics studies, as well as studies of issues specific to twins. New initiatives include: a Health and Life Style Questionnaire; data collection, management, and archiving using a secure online software program (The Ark); and the International Network of Twin Registries. The ATR's expertise and 30 years of experience in providing services to national and international twin studies has made it an important resource for research across a broad range of disciplines.

  4. 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

  5. Bisphosphonates adherence for treatment of osteoporosis

    PubMed Central

    2013-01-01

    Background Osteoporosis is a disease of bone metabolism in which bisphosphonates (BPS) are the most common medications used in its treatment, whose main objective is to reduce the risk of fractures. The aim of this study was to conduct a systematic review on BPs adherence for treatment of osteoporosis. Methods Systematic review of articles on BPs adherence for treatment of osteoporosis, indexed on MEDLINE (via PubMed) databases, from inception of databases until January 2013. Search terms were “Adherence, Medication” (MeSH term), “Bisphosphonates” (MeSH term), and “Osteoporosis” (MeSH term). Results Of the 78 identified studies, 27 met the eligibility criteria. Identified studies covered a wide range of aspects regarding adherence and associated factors, adherence and fracture, adherence and BPs dosage. The studies are mostly observational, conducted with women over 45 years old, showing low rates of adherence to treatment. Several factors may influence adherence: socio-economic and cultural, participation of physicians when guidance is given to the patient, the use of bone turnover markers, and use of generic drugs. The monthly dosage is associated with greater adherence compared to weekly dosage. Conclusions Considering the methodological differences between the studies, the results converge to show that adherence to treatment of osteoporosis with BPs is still inadequate. Further experimental studies are needed to evaluate the adherence and suggest new treatment options. PMID:23705998

  6. 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

  7. Adherence to Methotrexate therapy in Rheumatoid Arthritis

    PubMed Central

    Arshad, Nasim; Ahmad, Nighat Mir; Saeed, Muhammad Ahmed; Khan, Saira; Batool, Shabnam; Farman, Sumaira

    2016-01-01

    Objective: To determine adherence to methotrexate (MTX) therapy in patients with Rheumatoid Arthritis (RA) and to identify factors that promote either adherence or non adherence. Methods: One hundred Rheumatoid Arthritis patients on MTX for at least two months were enrolled. Questionnaire was completed by direct interview. Details recorded were, demographics (age, sex, education, monthly income), disease duration, duration on MTX and current dose. Disease Activity Score on 28 joint counts (DAS 28) at the current visit, concomitant drugs taken and number of doses of MTX missed in the previous 8 weeks were noted. Non adherence was defined as omission of any three or more prescribed doses of MTX in previous 8 week. Patients were asked for the factors that motivated their adherence to MTX as well as factors for non adherence. Presence of side effects due to MTX was also recorded. Result: Non adherence was found among 23% of cases. Patients of low socioeconomic group (p <0.0001) and on MTX for longer duration (p <0.001) had higher non adherence. Non adherent patients had significantly higher disease activity as measured by DAS 28 (p<0.001). Good counseling and education by the doctor was a strong predictor of adherence (p <0.001). Lack of affordability (p <0.001); lack of availability at local pharmacy (p <0.001); lack of family support (p <0.001) and lack of awareness regarding need and importance of MTX (p < 0.001were found as significant factors for non adherence. Conclusion: MTX non adherence in RA is noted in about one fourth of study group. Various economical and social issues lead to non adherence but good patient education and counseling by doctor could promote adherence in this study group. PMID:27182251

  8. Epidemiology of Rett syndrome: a population-based registry.

    PubMed

    Kozinetz, C A; Skender, M L; MacNaughton, N; Almes, M J; Schultz, R J; Percy, A K; Glaze, D G

    1993-02-01

    The Texas Rett Syndrome Registry maintains the largest population-based registry of cases and potential cases of Rett syndrome in the world. The most precise estimate of the prevalence of Rett syndrome of 1 per 22800 (0.44/10000) females aged 2 through 18 years of age was generated from this Registry. In addition, the first prevalence figures for black and Hispanic female cases were estimated. Registry cases are actively ascertained from multiple sources. Registry staff identify presumptive cases from review of information provided to the Registry by the parent or guardian. Preliminary diagnostic evaluation includes standardized review of medical records and videotape of key behaviors. Diagnosis is confirmed at clinical evaluation. The active surveillance system is monitored with the two-source capture-recapture methodology and case ascertainment is projected. The 1990 prevalence estimate of Rett syndrome indicates that the syndrome occurs less frequently than previously estimated. Until a biologic marker for Rett syndrome is identified or a standard definition for an incident case of Rett syndrome is designated, the prevalence of Rett syndrome will remain a major investigative issue of its epidemiology, and the Registry will be an important, systematic mean to gather case material for clinical and laboratory studies providing the foundation for the development of preventive interventions.

  9. The Registry of Canadian Stroke Network : an evolving methodology.

    PubMed

    Fang, Jiming; Kapral, Moira K; Richards, Janice; Robertson, Annette; Stamplecoski, Melissa; Silver, Frank L

    2011-06-01

    Stroke registries can provide information on evidence-based practices and interventions, which are critical for us to understand how stroke care is delivered and how outcomes are achieved. The Registry of Canadian Stroke Network (RCSN) was initiated in 2001 and has evolved over the past decade. In the first two years, we found it extremely difficult to obtain informed consent from the patient or surrogate which led to selection biases in the registry. Subsequently (2003 onwards), under the new health privacy legislation in Ontario, Canada, the RCSN was granted special status as a "prescribed registry" which allowed us to collect data on all consecutive patients at the regional stroke centres without consent. The stroke data was encrypted and all personal contact information had been removed, therefore we could no longer conduct follow- up interviews. To obtain patient outcomes after discharge, we linked the non-consent-based registry database to population-based administrative databases to obtain information on patient mortality, readmissions, socioeconomic status, medication use and other clinical information of interest. In addition, the registry methodology was modified to include a periodic population-based audit on a sample of all stroke patients from over 150 acute hospitals across the province, in addition to continuous data collection at the 12 registry hospitals in the province. The changes in the data collection methodology developed by the RCSN can be applied to other provinces and countries. PMID:21739386

  10. The Russian School Twin Registry (RSTR): project PROGRESS.

    PubMed

    Kovas, Yulia; Galajinsky, Eduard V; Boivin, Michel; Harold, Gordon T; Jones, Alice; Lemelin, Jean-Pascal; Luo, Yu; Petrill, Stephen A; Plomin, Robert; Tikhomirova, Tatiana; Zhou, Xinlin; Malykh, Sergey

    2013-02-01

    The Russian School Twin Registry (RSTR) was established in 2012, supported by a grant from the Government of the Russian Federation. The main aim of the registry is to contribute to Progress in Education through Gene-Environment Studies (PROGRESS). The formation of the registry is ongoing and it is expected that most schools in the Russian Federation (approximately 50,000 schools) will contribute data to the registry. With a total of 13.7 million students in Grades 1-11 (ages 7-18), the potential number of twin pairs exceeds 100,000. Apart from the large sample size and its representative nature, the RSTR has one unique feature: in collaboration with the International Advisory Committee to the Registry, genetically sensitive cross-cultural investigations are planned, aided by the use of the common assessment instruments. Other strengths of the registry include the assessment of a large sample of non-twin school children, including those studying in the same classes as the twins in the registry. It is hoped that the RSTR will provide an important research platform for national and international educationally relevant research.

  11. Does adherence therapy improve medication adherence among patients with schizophrenia? A systematic review.

    PubMed

    Hegedüs, Anna; Kozel, Bernd

    2014-12-01

    Non-adherence to medication is highly prevalent in patients with schizophrenia. Adherence therapy aims to improve medication adherence of these patients by applying techniques of cognitive behavioural therapy, psycho-education, and motivational interviewing. Even though adherence therapy is frequently discussed and researched, its effectiveness is still uncertain. This paper aims to review the effectiveness of adherence therapy on the medication adherence of patients with schizophrenia. To this end, six electronic databases were systematically searched for randomized, controlled trials on adherence therapy from January 2002 to March 2013. Four trials met the inclusion criteria and were incorporated into the review. The findings suggest that adherence therapy does not improve patients' medication adherence in comparison to treatment as usual or a control intervention. However, all the studies reviewed showed high-adherence ratings at baseline. Thus, further well-designed studies that target adherence therapy to patients who are non-adherent to their medication are needed for a more profound understanding of its effectiveness. In addition, if adherence therapy is aimed not only at improving medication adherence, but also to reach an agreement whereby the patient's decision not to take his medication is accepted, the shared decision-making process needs to be assessed as well.

  12. 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.

  13. 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.

  14. 76 FR 72424 - Submission for OMB Review; Comment Request Information Program on the Genetic Testing Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-23

    ... Program on the Genetic Testing Registry AGENCY: National Institutes of Health (NIH), PHS, DHHS. ACTION... control number. Proposed Collection: Title: The Genetic Testing Registry; Type of Information Collection... developing a voluntary registry of genetic tests. The Genetic Testing Registry (GTR) will provide...

  15. [Information in Home Nutrition: the importance of the registries].

    PubMed

    Wanden-Berghe, C; Sanz-Valero, J; Culebras, J

    2008-01-01

    The importance of the registries is determined by its data. In order for a registry to meet its objectives quality in codification, transcription and analysis is essential. These premises applied to a home nutrition registry give an information able to meet all the researchers' targets. The NADYA Group registry of the Spanish Society of Parenteral and Enteral Nutrition in Spain tries to measure home artificial nutrition, its indications, methods and ways of administration and other variables. From their studies we may conclude that Parenteral Nutrition is underutilized at present, probably due to a lack of supporting structures able to meet all the needs of home patients. However, tube enteral nutrition is increasing, which represents a reduction in hospital costs and, more important represents an improvement of the patients quality of life and, in turn, also of their relatives.

  16. Iliac Arteries: How Registries Can Help Improve Outcomes

    PubMed Central

    Tapping, Charles Ross; Uberoi, Raman

    2014-01-01

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

  17. A Computer System for Processing Tumor Registry Data

    PubMed Central

    Leahey, Charles F.

    1981-01-01

    An interactive computer system for processing tumor registry data has been developed by the Washington, D.C. VA Medical Center Systems Development Group. The automated registry system replaces a manual registry, which had been implemented according to the guidelines established for Cancer Programs by the American College of Surgeons. A permanent on-line data base of patient data is maintained by a minicomputer at the medical center. A user oriented application program provides entry, edit, and retrieval of patient data in the following formats - Suspense, Master, Accession, and Follow-up registers, and in Abstract form. Data entered in any of the formats is stored in a common file, and is available as needed in any other format. The programs were written in the standard Mumps Language. Construction of the Tumor Registry application was greatly assisted by use of the File Manager, a data base file management package written in the standard Mumps language.

  18. Introduction to the 2006 UK Renal Registry report (chapter 2).

    PubMed

    Ansell, David; Will, Es; Tomson, Charlie

    2007-08-01

    The UK Renal Registry is part of the UK Renal Association and provides independent audit and analysis of renal replacement therapy in the UK. The Registry is funded directly by participating renal units through an annual fee per patient registered. The Registry is now collecting data on incidence and prevalence from 100% of UK renal units, with the five remaining non-linked sites in England providing summary data. Maintaining and enhancing Registry functionality will be an important touchstone for the Connecting for Health initiative. Collaboration with other formal agencies also promises an exciting prospect for future development. After a long proving period, the means, methods and roles have come together to complete an effective adjunct to clinical activity, planning, research and the performance of the renal community.

  19. The Cuban Twin Registry: initial findings and perspectives.

    PubMed

    Marcheco-Teruel, Beatriz; Cobas-Ruiz, Marcia; Cabrera-Cruz, Niviola; Lantigua-Cruz, Araceli; García-Castillo, Elsa; Lardoeyt-Ferrer, Roberto; Robaina-Jiménez, Zoe; Fuentes-Smith, Evelyn; Morales-Calatayud, Francisco; Lemus-Valdés, María Teresa; Portuondo-Sao, Miriam; Comas-Pérez, Lenier; Pérez-Crispí, Juan M; Díaz-De Villal Villa, Thais; Icart-Perera, Emelia; Jordán-Hernández, Aida; Lage-Castellanos, Agustín; Rabell-Piera, Sergio; Llibre-Rodríguez, Juan de Jesús; Valdés-Sosa, Pedro; Valdés-Sosa, Mitchell

    2013-02-01

    The Cuban Twin Registry is a nation-wide, prospective, population-based twin registry comprising all zygosity types and ages. It was initiated in 2004 to study genetic and environmental contributions to complex diseases with high morbidity and mortality in the Cuban population. The database contains extensive information from 55,400 twin pairs enrolled in the period 2004-2006. Additionally, 2,600 new multiple births have been included from 2007 to date. In the past 4 years, more than 130 studies have been carried out using the registry with a classical genetic epidemiological approach in which concordance rates for monozygotic and dizygotic twins and heritability of various disease traits were estimated. This article summarizes the history, registry's methodology, recent research findings, and future directions of work. PMID:23228217

  20. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

    PubMed Central

    Ryerson, Christopher J.; Tan, Benjamin; Fell, Charlene D.; Manganas, Hélène; Shapera, Shane; Mittoo, Shikha; Sadatsafavi, Mohsen; To, Teresa; Gershon, Andrea; Fisher, Jolene H.; Johannson, Kerri A.; Hambly, Nathan; Khalil, Nasreen; Marras, Theodore K.; Morisset, Julie; Wilcox, Pearce G.; Halayko, Andrew J.; Khan, Mohammad Adil; Kolb, Martin

    2016-01-01

    Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD) have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF) is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1) describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2) determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research. PMID:27445528

  1. 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. PMID:26579661

  2. 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.

  3. Cancer registries in four provinces in Turkey: a case study

    PubMed Central

    2012-01-01

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

  4. 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. PMID:27396627

  5. The cancer registry: a clinical repository of oncology data.

    PubMed

    Hoyler, S S

    1997-02-01

    Health care institutions need complete and accurate data to plan, monitor, and evaluate their oncology programs. Although financial and discharge data are available, clinical repositories generally are not. For oncology, the cancer registry database serves as a clinical repository. The data in the registry are complete, accurate, and readily available. They can be used to plan new services, evaluate existing programs, and monitor patient care. PMID:10165382

  6. Improving hand hygiene adherence among nursing staff.

    PubMed

    Harne-Britner, Sarah; Allen, Marianne; Fowler, Kimberly A

    2011-01-01

    This quasi-experimental study explored initial and sustained effects of educational and behavioral interventions on hand hygiene adherence and the relationships between hand hygiene adherence and health care-associated infections. Education paired with positive reinforcement behavioral interventions significantly improved hand hygiene adherence after the first month (χ² = 4.27; P = .039); however, the improvement was not sustained over 6 months. There were no significant differences in infection rates between the treatment and control groups. PMID:20407392

  7. [Presentation of the new Spanish home artificial nutrition registry].

    PubMed

    Cuerda, C; Parón, L; Planas, M; Gómez Candela, C; Moreno, J M

    2007-01-01

    The registries are databases including information about a treatment or a disease in a definite population. Concerning home artificial nutrition there are registries of patients in different European countries, USA and Japan, collecting data such as the prevalence, indication, follow-up and complications of these treatments. The Spanish group of Home Artificial Nutrition (HAN), NADYA, was established in 1992 with professionals devoted to the practise of artificial nutrition. Since then, one of its wills was the development of the Spanish registry of HAN. This is a voluntary registry accessible through the web page www.nadya-senpe.com. In 2005, this group decided to update the registry according to the Data Protection Law and including other improvements. Thank to the work of all the members of this group we have many data on the practise of HAN in our country. Since 1994, except the years 97-98, the annual registries of patients on home parenteral nutrition and home enteral nutrition have been published periodically, observing an increase in both, the number of patients and collaborating centres, presenting to us the actual practise of HAN in our country.

  8. Big data in organ transplantation: registries and administrative claims.

    PubMed

    Massie, A B; Kucirka, L M; Kuricka, L M; Segev, D L

    2014-08-01

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

  9. 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.

  10. Histamine increases sickle erythrocyte adherence to endothelium.

    PubMed

    Wagner, Matthew C; Eckman, James R; Wick, Timothy M

    2006-02-01

    Complications of sickle cell anaemia include vascular occlusion triggered by the adherence of sickle erythrocytes to endothelium in the postcapillary venules. Adherence can be promoted by inflammatory mediators that induce endothelial cell adhesion molecule expression and arrest flowing erythrocytes. The present study characterised the effect of histamine stimulation on the kinetics of sickle cell adherence to large vessel and microvascular endothelium under physiological flow. Increased sickle cell adherence was observed within minutes of endothelial activation by histamine and reached a maximum value within 30 min. At steady state, sickle cell adherence to histamine-stimulated endothelium was 47 +/- 4 adherent cells/mm(2), 2.6-fold higher than sickle cell adherence to unstimulated endothelial cells. Histamine-induced sickle cell adherence occurred rapidly and transiently. Studies using histamine receptor agonists and antagonists suggest that histamine-induced sickle cell adhesion depends on simultaneous stimulation of the H(2) and H(4) histamine receptors and endothelial P-selectin expression. These data show that histamine release may promote sickle cell adherence and vaso-occlusion. In vivo histamine release should be studied to determine its role in sickle complications and whether blocking of specific histamine receptors may prevent clinical complications or adverse effects from histamine release stimulated by opiate analgesic treatment.

  11. 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

  12. Antihypertensive medication adherence among elderly Chinese Americans.

    PubMed

    Hsu, Ya-Hui; Mao, Chia-Ling; Wey, Mercy

    2010-10-01

    This study explored the level of antihypertensive medication adherence and examined certain demographic attributes and influential factors in relation to antihypertensive medication nonadherence among Chinese American elders using a descriptive cross-sectional survey design. Findings revealed that 52% of the elderly Chinese Americans adhered to their antihypertensive medications. Gender, education, years of residency in the United States, years of diagnosed hypertension, and perceived safety of taking antihypertensive medications did not contribute to the differences in medication adherence. Forgetfulness, medication adverse effects, language difficulties, and cultural barriers were the influential factors that hinder antihypertensive medication adherence. Developing effective and culturally appropriate strategies for Chinese American elders is recommended.

  13. [Treatment adherence and chronic inflammatory bowel diseases].

    PubMed

    Tahri, Nabil

    2007-09-01

    For inflammatory bowel disease, unlike other chronic illnesses, there are sparse data available about patients' adherence to medication. The few studies vary widely, but noncompliance rates tend to be high, about 30-40%. Psychiatric disorders, including depression and anxiety, and poor patient-physician relationships are the most common causes of these patients' lack of adherence. Failure to adhere to prescribed medications increases risk of relapse and of colorectal cancer. Strategies that can improve adherence include establishing a partnership with the patient, simplifying the treatment regimen and increasing awareness through education and feedback.

  14. 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.

  15. 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.

  16. The global registry: hope for the future.

    PubMed

    Broumand, Behrooz

    2015-04-01

    In 2014, there is unanimous agreement that kidney transplant is the optimal treatment for most patients who have end-stage renal failure. Increasing organ shortage is the main obstacle that delays transplant and might even cause death while the patient is on the waiting list for kidney transplant. Many innovations have been proposed to increase the number of organs for transplant in different countries such as increasing awareness about organ donation, based on different cultures and religions. Support of religious and faith leaders exists for procurement of organs for transplant from patients with brain death or circulatory death. In the past decade, use of marginal and expandedcriteria deceased-donor transplant has been very helpful to expand the kidney donor pool. Dual kidney transplant is another procedure that may minimize the waiting list. The 1977 transport of kidneys from Minneapolis to Tehran helped change the life of a 15-year-old girl. At that time, we had the potential to change a life across 2 continents, even though our techniques were new. This should have provided the impetus to develop such a program. Presently, with progress in science, techniques, and organ shipment, it is our responsibility to reach across the globe to change the lives of many more young and adult patients waiting for kidney transplant. There are many countries in which kidneys from patients with brain or cardiac death are being discarded because of the unavailability of a transplant program in these countries, or because these countries have young transplant programs and very limited resources. If a global registry could be organized under the observation of the International Society of Nephrology and The Transplantation Society Sister Transplant Center Program, transplant teams would be able to use kidneys from patients with brain or cardiac death, with strict regulation of organ donation in accordance with World Health Organization guidelines. PMID:25894119

  17. The global registry: hope for the future.

    PubMed

    Broumand, Behrooz

    2015-04-01

    In 2014, there is unanimous agreement that kidney transplant is the optimal treatment for most patients who have end-stage renal failure. Increasing organ shortage is the main obstacle that delays transplant and might even cause death while the patient is on the waiting list for kidney transplant. Many innovations have been proposed to increase the number of organs for transplant in different countries such as increasing awareness about organ donation, based on different cultures and religions. Support of religious and faith leaders exists for procurement of organs for transplant from patients with brain death or circulatory death. In the past decade, use of marginal and expandedcriteria deceased-donor transplant has been very helpful to expand the kidney donor pool. Dual kidney transplant is another procedure that may minimize the waiting list. The 1977 transport of kidneys from Minneapolis to Tehran helped change the life of a 15-year-old girl. At that time, we had the potential to change a life across 2 continents, even though our techniques were new. This should have provided the impetus to develop such a program. Presently, with progress in science, techniques, and organ shipment, it is our responsibility to reach across the globe to change the lives of many more young and adult patients waiting for kidney transplant. There are many countries in which kidneys from patients with brain or cardiac death are being discarded because of the unavailability of a transplant program in these countries, or because these countries have young transplant programs and very limited resources. If a global registry could be organized under the observation of the International Society of Nephrology and The Transplantation Society Sister Transplant Center Program, transplant teams would be able to use kidneys from patients with brain or cardiac death, with strict regulation of organ donation in accordance with World Health Organization guidelines.

  18. Adherence of Mycoplasma hyopneumoniae to cell monolayers.

    PubMed

    Zielinski, G C; Young, T; Ross, R F; Rosenbusch, R F

    1990-03-01

    This work was an attempt to develop an in vitro adherence model for Mycoplasma hyopneumoniae, using monolayers of human and porcine lung fibroblasts and porcine kidney cells. Mycoplasma hyopneumoniae grown in Friis mycoplasma broth was radiolabeled with 35[S]-methionine, washed, concentrated, and inoculated on the monolayers. After 15 minutes of centrifugation to facilitate adherence, monolayers were washed 3 times, dissolved with 0.1N NaOH, and suspended in scintillation liquid, and the radioactivity was determined in a liquid scintillation counter. Adherence, measured as a percentage of counts added, varied according to the mycoplasma strain and the cell line used. Comparison of strains J, 144L, and 232 of M hyopneumoniae revealed 7.5 +/- 5.9, 31.9 +/- 13, and 9.6 +/- 5% adherence to porcine kidney cells, respectively. Slightly different, but proportionally the same relationships were obtained with swine or human fibroblasts. Adherence was decreased slightly by repeated washings of the mycoplasma-treated cell monolayers; however, a plateau was reached, indicating irreversibility of the adherence process. Pretreatment of cell monolayers with nonlabeled organisms substantially blocked adherence by labeled organisms. Dilution of labeled organisms resulted in an increased proportion adhering. Therefore, it appears that the adherence was a receptor-dependent event. Treatment of the mycoplasmas with trypsin prior to the inoculation of monolayers resulted in a marked reduction in adherence. Treatment of the mycoplasmas with hyperimmune swine serum against M hyopneumoniae or normal swine serum resulted in 80 to 90% reduction of adherence; however, no inhibition occurred when mycoplasmas were treated with purified IgG from the hyperimmune serum.

  19. Intent-to-adhere and adherence to malaria prevention recommendations in two travel clinics.

    PubMed

    Goldstein, Irit; Grefat, Rami; Ephros, Moshe; Rishpon, Shmuel

    2015-01-01

    Malaria infects 30,000 travelers annually worldwide. At greatest risk are those who travel for long duration. Prevention of malaria includes chemoprophylaxis. This prospective study on 121 travelers who visited two travel clinics shows that adherence to prophylactic treatment was low, especially in long duration trips, and that adherence rate could be predicted by the much more available intent-to-adhere rate.

  20. 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.

  1. 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…

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

    PubMed Central

    2014-01-01

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

  3. 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.

  4. 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. PMID:25956611

  5. Adherence to guidelines in gynecologic cancer surgery.

    PubMed

    Ferron, Gwenael; Martinez, Alejandra; Gladieff, Laurence; Mery, Eliane; David, Isabelle; Delannes, Martine; Montastruc, Marion; Balagué, Gisèle; Picaud, Laetitia; Querleu, Denis

    2014-11-01

    The purpose of this study is to review the available evidence documenting the prognostic role of adherence to guidelines in gynecologic cancers. A systematic review of the PubMed database using "guideline," "adherence," and "cancer" was carried out on February 25, 2014. Two thousand one hundred twenty-three publications were identified. Only publications addressing the question of adherence to recommendations regarding surgical care and multidisciplinary management of gynecologic cancers were selected. Six studies were identified in endometrial cancer, 4 in ovarian cancer, and none in cervical cancer. Adoption of guidelines is an effective tool for disease control and must consequently be considered as a process measure of quality cancer care. It is urgent to develop reliable and reproducible tools to assess adherence to guidelines based on level 1 evidence in gynecologic cancer then to carry out investigations to document the prognostic impact of compliance with guidelines. The time has come to include adherence to guidelines in quality assurance programs. PMID:25340292

  6. 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.

  7. Adherence to Antiretroviral Therapy and Virologic Failure

    PubMed Central

    Bezabhe, Woldesellassie M.; Chalmers, Leanne; Bereznicki, Luke R.; Peterson, Gregory M.

    2016-01-01

    Abstract The often cited need to achieve ≥95% (nearly perfect) adherence to antiretroviral therapy (ART) for successful virologic outcomes in HIV may present a barrier to initiation of therapy in the early stages of HIV. This meta-analysis synthesized 43 studies (27,905 participants) performed across >26 countries, to determine the relationship between cut-off point for optimal adherence to ART and virologic outcomes. Meta-analysis was performed using a random-effect model to calculate pooled odds ratios with corresponding 95% confidence intervals. The mean rate of patients reporting optimal adherence was 63.4%. Compared with suboptimal adherence, optimal adherence was associated with a lower risk of virologic failure (0.34; 95% CI: 0.26–0.44). There were no significant differences in the pooled odds ratios among different optimal adherence thresholds (≥98–100%, ≥95%, ≥80–90%). Study design (randomized controlled trial vs observational study) (regression coefficient 0.74, 95% CI: 0.04–1.43, P < 0.05) and study region (developing vs developed countries; regression coefficient 0.56, 95% CI: 0.01–1.12, P < 0.05) remained as independent predictors of between-study heterogeneity, with more patients with optimal adherence from developing countries or randomized controlled trials experiencing virologic failure. The threshold for optimal adherence to achieve better virologic outcomes appears to be wider than the commonly used cut-off point (≥95% adherence). The cut-off point for optimal adherence could be redefined to a slightly lower level to encourage the prescribing ART at an early stage of HIV infection. PMID:27082595

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

    PubMed Central

    Chesney, Russell W.; Patters, Andrea B.

    2012-01-01

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

  9. The development of a nationwide registry of wheelchair users.

    PubMed

    Fitzgerald, Shirley G; Kelleher, Annmarie; Teodorski, Emily; Collins, Diane M; Boninger, Michael; Cooper, Rory A

    2007-11-01

    This paper provides an overview of the development of a wheelchair users registry and subsequently describes a population of individuals who use wheelchairs. The characteristics of Americans who permanently use wheelchairs and scooters are currently unknown. As the result of developing a Registry of individuals who use wheeled mobility devices for systematic recruitment for research studies, this study provides a description of a nationwide sample of over 1000 individuals who used wheelchairs or scooters for their daily mobility. The Registry is predominantly Caucasian (83%), 63% male, with a mean age of 50 years. Some 54% used manual wheelchairs for an average of 16 years. When quality of wheelchairs was compared, results indicated those in more customizable manual wheelchairs were significantly more likely to be younger. Males were significantly more likely to receive more customizable, heavy duty power wheelchairs than females. The Wheelchair Users Registry provides an organized and systematic way to maintain contact with previous research participants. Expected to grow in size, the Registry may enable an even more diverse pool of subjects interested in participating in research studies.

  10. 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.

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

    PubMed Central

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

    2015-01-01

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

  12. 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

  13. 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. PMID:27069676

  14. 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.

  15. Data management of an inflammatory bowel disease registry.

    PubMed

    Reed, J F; Moser, K A; Faust, L A; Mills, S

    1992-06-01

    The history and etiology of inflammatory bowel disease which is characterized by two major disease processes: ulcerative colitis and Crohn's disease, remain unknown. Research is focussing on seven major areas of genetic, environmental and physiologic factors that apparently relate to this disease. Based on this background, a population based Inflammatory Bowel Disease Registry was established in 1987 in the Lehigh Valley area of southeastern Pennsylvania. Consent forms, patient data forms and protocols for operation and implementation were developed, and databases were designed to accommodate demographic, basic history, follow-up and relative history data. The databases were correlated with an IBD registry ID number which both enabled relational analyses and ensured confidentiality of data information. The registry continues to grow, providing feedback for both continued medical research and supportive information for IBD patients and their physicians. PMID:1402437

  16. Data management of an inflammatory bowel disease registry.

    PubMed

    Reed, J F; Moser, K A; Faust, L A; Mills, S

    1992-06-01

    The history and etiology of inflammatory bowel disease which is characterized by two major disease processes: ulcerative colitis and Crohn's disease, remain unknown. Research is focussing on seven major areas of genetic, environmental and physiologic factors that apparently relate to this disease. Based on this background, a population based Inflammatory Bowel Disease Registry was established in 1987 in the Lehigh Valley area of southeastern Pennsylvania. Consent forms, patient data forms and protocols for operation and implementation were developed, and databases were designed to accommodate demographic, basic history, follow-up and relative history data. The databases were correlated with an IBD registry ID number which both enabled relational analyses and ensured confidentiality of data information. The registry continues to grow, providing feedback for both continued medical research and supportive information for IBD patients and their physicians.

  17. 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

  18. 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

  19. Global comparisons for developing a national dementia registry in Cuba.

    PubMed

    González, José Alberto

    2015-01-01

    A review/analysis of current literature on exemplary multicenter registries of clinical dementias was conducted as a comparative basis for a proposed Cuban registry on cognitive impairment and dementia. The study of mental health disorders has been predominantly based on clinical concepts and criteria, and only in recent years a public health approach has been applied. Traditional epidemiological studies do not reveal patterns of cognitive impairment and behavioral disorders (particularly dementias) in routine clinical practice in a defined geographic area, which would provide essential information for long-term planning and allocation of health and social resources. Thus, multicenter clinical registries have become an important source of clinical and epidemiological data on dementias in recent decades. This article addresses the Cuban proposal for an automated national dementia registry, comparing it to others internationally. The registry would be housed in the Neurology and Neurosurgery Institute, and would include a duly protected surveillance network hosted on the Institute's website. Such a multicenter dementia registry based on epidemiological surveillance methods and limited to a defined area would provide new, valid, representative and current data on dementia occurrence patterns by subtype, flow of case identification and referral from primary care, as well as the main clinical features of patients at the time of their first contact with health services. This information would support development of health planning policies for implementation of programs aimed at improved distribution of social and health resources in the affected population, monitoring of the disorder's natural evolution and identification of preventive measures. The scientific benefits would be equally important: production of new knowledge, generation of hypotheses for clinical research projects, standardization of diagnostic criteria, and promotion of multicenter research in both

  20. [Guideline adherence - is more always better?].

    PubMed

    Nothacker, M J

    2016-09-01

    Guidelines play an increasing role in the health system. Guidelines are intended to provide guidance in the sense of ‟corridors for action and decision", whereby in certain justified cases actions can - or even must - deviate from them. "Cookbook medicine" is not the aim of guidelines.Guideline adherence can not necessarily be equated with guideline conformity. Adherence presumes an agreed treatment goal between patient and physician and focuses the behavior of the patient. Based on current studies on guideline adherence, the use of the term in studies on urological tumors is analyzed.

  1. 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

  2. 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.

  3. 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.

  4. 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.

  5. DANBIO: a nationwide registry of biological therapies in Denmark.

    PubMed

    Hetland, M L

    2005-01-01

    Since the year 2000, Danish rheumatologists have been collecting data on a routine basis in the nationwide DANBIO registry, which includes all rheumatologic patients receiving biological drugs. Demographic data, markers of disease activity, current treatment, serious and non-serious adverse events and reasons for discontinuation are registered at each visit either on paper forms or on-line. By June 2005, approximately 3000 treatment courses (18,000 visits) were in the registry, corresponding to close to 90% of eligible patients. Rheumatoid arthritis was the most prevalent diagnosis (75%) followed by ankylosing spondylitis (11%) and psoriatic arthritis (7%). Infections occurred in 43% of the treatment series. PMID:16273809

  6. 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

  7. 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.

  8. A report of the Malaysian dialysis registry of the National Renal Registry, Malaysia.

    PubMed

    Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z

    2008-09-01

    The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD

  9. 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

  10. Bayesian population modeling of drug dosing adherence.

    PubMed

    Fellows, Kelly; Stoneking, Colin J; Ramanathan, Murali

    2015-10-01

    Adherence is a frequent contributing factor to variations in drug concentrations and efficacy. The purpose of this work was to develop an integrated population model to describe variation in adherence, dose-timing deviations, overdosing and persistence to dosing regimens. The hybrid Markov chain-von Mises method for modeling adherence in individual subjects was extended to the population setting using a Bayesian approach. Four integrated population models for overall adherence, the two-state Markov chain transition parameters, dose-timing deviations, overdosing and persistence were formulated and critically compared. The Markov chain-Monte Carlo algorithm was used for identifying distribution parameters and for simulations. The model was challenged with medication event monitoring system data for 207 hypertension patients. The four Bayesian models demonstrated good mixing and convergence characteristics. The distributions of adherence, dose-timing deviations, overdosing and persistence were markedly non-normal and diverse. The models varied in complexity and the method used to incorporate inter-dependence with the preceding dose in the two-state Markov chain. The model that incorporated a cooperativity term for inter-dependence and a hyperbolic parameterization of the transition matrix probabilities was identified as the preferred model over the alternatives. The simulated probability densities from the model satisfactorily fit the observed probability distributions of adherence, dose-timing deviations, overdosing and persistence parameters in the sample patients. The model also adequately described the median and observed quartiles for these parameters. The Bayesian model for adherence provides a parsimonious, yet integrated, description of adherence in populations. It may find potential applications in clinical trial simulations and pharmacokinetic-pharmacodynamic modeling. PMID:26319548

  11. Adherence of Staphylococcus epidermidis to intraocular lenses.

    PubMed Central

    Griffiths, P. G.; Elliot, T. S.; McTaggart, L.

    1989-01-01

    We have demonstrated, with an in vitro model, that Staphylococcus epidermidis is able to colonise intraocular lenses. Adherent organisms were quantitated by light microscopy, scanning electron microscopy, and viable counting. Bacterial adherence was associated with production of a polysaccharide glycocalyx. Organisms which were attached to the lenses were resistant to apparently bactericidal concentrations of antibiotics, as determined by conventional testing. We speculate on the role of colonisation in the pathogenesis of endophthalmitis. Images PMID:2751971

  12. 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):...

  13. The National Marrow Donor Program and Be The Match Registry | NIH MedlinePlus the Magazine

    MedlinePlus

    ... Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table ... the National Marrow Donor Program (NMDP) and its Be The Match Registry are nonprofit organizations dedicated to ...

  14. Emerging technologies for electronic monitoring of adherence, inhaler competence, and true adherence.

    PubMed

    Pritchard, John N; Nicholls, Clare

    2015-04-01

    Despite the availability of effective treatments for respiratory disorders, disease control is often suboptimal, due in part to the failure of patients to adhere to prescribed regimens, or to demonstrate competence with the often complex steps in the administration of inhaled medications. The cost of poor true adherence, a combined measure of adherence and inhaler competence, is considerable, both economically and in terms of health-related impact. While patient education is recognized as essential, there exist many barriers to healthcare professional-led monitoring and promotion of true adherence. Successful intervention remains a challenging task, dependent upon understanding and addressing the distinct issues associated with poor adherence and inhaler competence, and lessening the perceived burden on healthcare professionals. Electronic monitors provide an accurate and objective indication of adherence and may also be of value in assessing inhaler competence. The information provided by such devices is a helpful aid to understanding the challenging nature of true adherence, and may be crucial to the development and assessment of true adherence promoting interventions. This article provides a background to the impact of suboptimal adherence and inhaler competence, and the challenges associated with the promotion of true adherence, with an emphasis on respiratory therapies. Contemporary electronic monitors of adherence and inhaler competence are critically reviewed, and case studies of emerging technologies are provided to illustrate the use of innovative monitoring devices in the promotion of true adherence in practice. Potential future directions, including increased targeting and individualization, enhanced coordination of care, and a greater focus on inhaler competence are considered to be important additions to currently available technologies in this rapidly evolving field.

  15. 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

  16. Patient Perceptions of Voice Therapy Adherence

    PubMed Central

    van Leer, Eva; Connor, Nadine P.

    2009-01-01

    Purpose 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. Methods Fifteen patients who had undergone at least 2 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. Results Three common content themes emerged from the transcripts: Voice Therapy is Hard, Make it Happen, and The Match Matters. Findings are compared to reports of patient experiences in other behavioral interventions such as diet and exercise, and related to existing theoretical models of behavior change and the therapeutic process. Conclusion This study yields information toward the development of scales to measure adherence-related constructs and strategies to improve treatment adherence in voice therapy. PMID:19775866

  17. Patient Education and Adherence to Aerosol Therapy.

    PubMed

    Ari, Arzu

    2015-06-01

    Nonadherence to prescribed medications results in disease instability and poor clinical control, with increases in hospital admissions, emergency room visits, school/work absenteeism, morbidity, and mortality. Poor patient adherence to therapy can be due to lack of cognition, competence, or contrivance. Patients who have not been trained or fail to understand use of drug and device combinations (cognition) often do not have the ability to use an aerosol device correctly (competence). Many patients have the competence to use the device correctly and know why they should use the device in the way they were taught; however, they still contrive to use it in an ineffective and suboptimal manner that reduces its efficiency and effectiveness. Ensuring effective aerosol therapy and optimizing its role in disease management involve not only delivery of aerosolized medications to the lungs, but also understanding why, when, and how to use the medications, competence to use the device, motivation to adhere to therapy, and not contriving to use the device in a way that will prevent effective drug delivery. This paper explains some of the problems with patient education and adherence to aerosol therapy and suggests strategies to evaluate, monitor, and improve patient adherence effectively in primary care. Factors affecting patient adherence to prescribed medications, effective educational interventions, and strategies to promote patient adherence to aerosol therapy are also discussed.

  18. 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.

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

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Operation of the Complaint Registry. 96.70 Section 96.70 Foreign Relations DEPARTMENT OF STATE LEGAL AND RELATED SERVICES ACCREDITATION OF AGENCIES AND APPROVAL OF PERSONS UNDER THE INTERCOUNTRY ADOPTION ACT OF 2000 (IAA) Oversight Through Review of Complaints § 96.70 Operation of the...

  20. 77 FR 24103 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-20

    ... complete Privacy Act Statement, published in the Federal Register on April 11, 2000 (65 FR 19476), or you...) to establish the National Registry (73 FR 73129). The public comment period for the NPRM closed on... CMV drivers (57 FR 33276; July 28, 1992). All medical examiners were required to be...

  1. 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 Section 96.70 Foreign Relations DEPARTMENT OF STATE LEGAL AND RELATED SERVICES ACCREDITATION OF AGENCIES AND APPROVAL OF PERSONS UNDER THE INTERCOUNTRY ADOPTION ACT OF 2000 (IAA) Oversight Through Review of Complaints § 96.70 Operation of the...

  2. 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.

  3. 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

    2016-01-01

    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

  4. 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

  5. Reporting Melanoma: A Nationwide Surveillance of State Cancer Registries.

    PubMed

    Raji, Kehinde O; Payne, Lauren; Chen, Suephy C

    2015-01-01

    The goal of our study was to determine current melanoma reporting methods available to dermatologists and dermatopathologists and quantify changes in reporting methods from 2012 to 2014. A cross-sectional study design was utilized consisting of website perusal of reporting procedures, followed up by telephone and email inquiry of reporting methods from every state cancer registry. This study was conducted over a six-month period from February to August 2014. A previous similar survey was conducted in 2012 over the same time frame and results were compared. Kansas state cancer registry provided no data. As of August 2014, 96% of 49 state cancer registries had electronic methods available to all designated reporters. Seven (14%) states required an electronic-only method of reporting melanoma cases. Eighty-six percent allowed hard copy pathology report submission. Compared to the 2012 survey, 2 additional states were found to have initiated electronic reporting methods by 2014. In conclusion, a variety of methods exist for reporting diagnosed melanoma cases. Although most state cancer registries were equipped for electronic transmission of cases for mandated reporters, a number of states were ill-equipped for electronic submission from outpatient dermatologists. There was a general trend towards electronic versus nonelectronic reporting from 2012 to 2014. PMID:26839706

  6. 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 OF THE TREASURY LIQUORS PRODUCTION OF VOLATILE FRUIT-FLAVOR CONCENTRATE Qualification §...

  7. 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 OF THE TREASURY LIQUORS PRODUCTION OF VOLATILE FRUIT-FLAVOR CONCENTRATE Qualification §...

  8. Retinoblastoma Registry report--Hospital Kuala Lumpur experience.

    PubMed

    Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P

    2010-06-01

    Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem.

  9. 46 CFR 11.807 - Experience requirements for registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 46 Shipping 1 2010-10-01 2010-10-01 false Experience requirements for registry. 11.807 Section 11... REQUIREMENTS FOR OFFICER ENDORSEMENTS Registration of Staff Officers § 11.807 Experience requirements for... experience as follows: (1) Chief purser. Two years of service aboard vessels performing duties relating...

  10. The Ped-APS Registry: the antiphospholipid syndrome in childhood.

    PubMed

    Avcin, T; Cimaz, R; Rozman, B

    2009-09-01

    In recent years, antiphospholipid syndrome (APS) has been increasingly recognised in various paediatric autoimmune and nonautoimmune diseases, but the relatively low prevalence and heterogeneity of APS in childhood made it very difficult to study in a systematic way. The project of an international registry of paediatric patients with APS (the Ped-APS Registry) was initiated in 2004 to foster and conduct multicentre, controlled studies with large number of paediatric APS patients. The Ped-APS Registry is organised as a collaborative project of the European Forum on Antiphospholipid Antibodies and Juvenile Systemic Lupus Erythematosus Working Group of the Paediatric Rheumatology European Society. Currently, it documents a standardised clinical, laboratory and therapeutic data of 133 children with antiphospholipid antibodies (aPL)-related thrombosis from 14 countries. The priority projects for future research of the Ped-APS Registry include prospective enrollment of new patients with aPL-related thrombosis, assessment of differences between the paediatric and adult APS, evaluation of proinflammatory genotype as a risk factor for APS manifestations in childhood and evaluation of patients with isolated nonthrombotic aPL-related manifestations.

  11. 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

  12. 76 FR 14366 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-16

    ... Federal Motor Carrier Safety Administration 49 CFR Parts 390 and 391 RIN 2126-AA97 National Registry of Certified Medical Examiners AGENCY: Federal Motor Carrier Safety Administration, Transportation. ACTION... Motor Carrier Safety Administration (FMCSA) is making available for public comment a modification of...

  13. 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 Section 201.25 Patents, Trademarks, and Copyrights COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT OFFICE... owners of buildings, or their duly authorized representatives, for recordation in the Copyright...

  14. 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 Section 201.25 Patents, Trademarks, and Copyrights U.S. COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT... owners of buildings, or their duly authorized representatives, for recordation in the Copyright...

  15. 75 FR 72793 - National Saltwater Angler Registry Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-11-26

    ... National Oceanic and Atmospheric Administration RIN 0648-XA050 National Saltwater Angler Registry Program... registration of anglers, spear fishers and for-hire fishing vessels to register under the National Saltwater...: Gordon.Colvin@noaa.gov . SUPPLEMENTARY INFORMATION: The final rule implementing the National...

  16. The Murcia Twin Registry: a population-based registry of adult multiples in Spain.

    PubMed

    Ordoñana, Juan R; Rebollo-Mesa, Irene; Carrillo, Eduvigis; Colodro-Conde, Lucía; García-Palomo, Francisco J; González-Javier, Francisca; Sánchez-Romera, Juan F; Aznar Oviedo, José M; de Pancorbo, Marian M; Pérez-Riquelme, Francisco

    2013-02-01

    The Murcia Twin Registry (MTR) was created in 2006, under the auspices of the University of Murcia and the regional Health Authority, aiming to develop a research resource in Spain intended to stimulate current research and new investigation on the analysis of genetic factors related to health and health-related behaviors. The MTR development strategy was designed as a step-by-step process. Initially, it was focused on women's health but nowadays it includes males and opposite-sex twins. The database comprises 2,281 participants born between 1940 and 1966 in the region of Murcia, in Spain. There have been three waves of data collection and today the MTR databases include questionnaire and anthropometric data as well as biological samples. The current main areas of research interest are health and health-related behaviors, including lifestyle, health promotion, and quality of life. Future short-term development points to the completion of the biobank and continuing the collection of longitudinal data.

  17. 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

  18. 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

  19. Medication prescription and adherence disparities in non valvular atrial fibrillation patients: an Italian portrait from the ARAPACIS study.

    PubMed

    Raparelli, Valeria; Proietti, Marco; Buttà, Carmelo; Di Giosia, Paolo; Sirico, Domenico; Gobbi, Paolo; Corrao, Salvatore; Davì, Giovanni; Vestri, Anna Rita; Perticone, Francesco; Corazza, Gino Roberto; Violi, Francesco; Basili, Stefania

    2014-12-01

    Non-valvular atrial fibrillation (NVAF) represents a major health-care problem, needing an extensive and strict thrombosis prevention for stroke and cardiovascular (CV) disease risks. NVAF management guidelines recommend adequate antithrombotic and anti-atherosclerotic therapies. Medication adherence has been recognized as a pivotal element in health quality promotion and in the achievement of better clinical outcomes. We conducted a post-hoc analysis of the "Atrial fibrillation Registry for Ankle-brachial index Prevalence Assessment-Collaborative Italian Study (ARAPACIS)" with the aim of discerning differences in pharmacological management and medication adherence among NVAF Italian patients. Furthermore, data were analysed according to Italian geographical macro-regions (North, Center, South) to evaluate whether socioeconomic conditions might also influence medication adherence. Thus, we selected 1,366 NVAF patients that fulfilled the Morisky Medication Adherence Scale-4 items. Regional disparities in drug prescriptions were observed. In particular, in high-risk patients (CHA2DS2-VASc ≥2) oral anticoagulants were more prescribed in Northern and Center patients (61 and 60 %, respectively) compared to 53 % of high-risk Southern patients. Also, medication adherence showed a progressive decrease from North to South (78 vs. 60 %, p < 0.001). This disparity was independent of the number of drugs consumed for any reason, since prevalence of poly-therapy among the three macro-regions was similar. Our results show regional differences in NVAF patients' antithrombotic management and medication adherence, potentially reflecting well-known disparities in socioeconomic status among Italian regions. Future interventions promoting campaigns to global health-care education may be desirable to improve clinical outcomes in NVAF patients. PMID:24990547

  20. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Registry under this Rule, 47 CFR 64.1200, or any other Federal regulation or law. Any person accessing the... Registry. 310.8 Section 310.8 Commercial Practices FEDERAL TRADE COMMISSION REGULATIONS UNDER SPECIFIC ACTS OF CONGRESS TELEMARKETING SALES RULE § 310.8 Fee for access to the National Do Not Call Registry....

  1. 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…

  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. 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.

  4. 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...

  5. 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. PMID

  6. 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.

  7. 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

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

    PubMed Central

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

    2015-01-01

    The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clinical care. The cohort was assembled in the early 1960s with identification of approximately 16 000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI. PMID:25183748

  9. 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. PMID:25183748

  10. Assessing adherence factors in patients under topical treatment: development of the Topical Therapy Adherence Questionnaire (TTAQ).

    PubMed

    Zschocke, Ina; Mrowietz, Ulrich; Lotzin, Annett; Karakasili, Eleni; Reich, Kristian

    2014-04-01

    Medication adherence rates strongly depend on favorable disease outcomes. It is known that medication adherence rates are lower for topical treatment than for systemic treatment. However, to date no validated instrument for the assessment of adherence factors in topical treatment is available. The aim of this study was to develop a new questionnaire to assess adherence risk factors in topical treatment. The development of the Topical Therapy Adherence Questionnaire (TTAQ) and Patient Preference Questionnaire (PPQ) was based on a systematic literature review, and qualitative patient focus interviews and expert focus groups' input. The psychometric properties and comprehensibility of the TTAQ and PPQ were assessed in a feasibility study with 59 psoriasis patients. Our first preliminary results indicate that the TTAQ and PPQ are psychometrically sound and reliable measures for the assessment of factors influencing topical treatment adherence. The questionnaires are currently being further developed and various parameters (e.g., time point of assessment) are currently being tested in an exploratory pilot study with ca. 2,000 psoriasis patients receiving topical treatment in a European clinical trial. The use of the final versions of TTAQ and PPQ in clinical practice may facilitate the early identification of specific non-adherence factors in patients under topical treatment, which could enable designing and applying adherence-enhancing interventions according to the patient's individual needs.

  11. [Monitoring of pregnancies exposed to drugs in France: the experience of the registries of congenital malformations].

    PubMed

    Doray, Bérénice

    2014-01-01

    Registries of congenital malformations were implemented in many industrialized countries following the drama of thalidomide. In 2013, four French registries of congenital malformations in France provide the systematic epidemiological surveillance of birth defects. All are part of international networks of registries, especially European surveillance of congenital anomalies (EUROCAT). If the development of prevention actions including prenatal diagnosis has gradually led the registries to play a key role of assessment on the impact of public health policies, one of the major roles of registries of congenital malformations remains early detection of clusters of malformations secondary to teratogenic effects.

  12. 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.

  13. Resolving the circumstellar environment of the B[e] star V921 Scorpii in the near-infrared with VLTI/AMBER

    NASA Astrophysics Data System (ADS)

    Kreplin, A.; Kraus, S.; Hofmann, K.-H.; Schertl, D.; Weigelt, G.; Driebe, T.

    2012-01-01

    Aims: We study the AU-scale circumstellar environment of the unclassified B[e] star V921 Sco in the near-infrared. For interpreting the observations, we employ temperature-gradient disk models. Methods: Using the near-infrared beam combiner instrument AMBER, we recorded spectrally dispersed (spectral resolution R = 35) interferograms in the H and K bands. To obtain an improved calibration of the visibilities, we developed a method that is able to equalize the histograms of the optical path difference of target and calibrator. We fit temperature-gradient disk models to the visibilities and spectral energy distribution (SED) to analyze the circumstellar dust geometry. Results: We derived a geometric ring-fit radius of 2.10 ± 0.16 mas in the K band. If we adopt the distance of 1150 ± 150 pc reported elsewhere, we obtain a ring-fit radius of 2.4 AU, which is slightly smaller than the 3.5 AU dust sublimation radius predicted by the size-luminosity relation. The fitted H-band radius of 1.61 ± 0.23 mas (1.85 AU) is found to be more compact than the K-band radius. The best-fit temperature-gradient disk model has an inner disk radius of ~1.45 AU, an inner-edge disk temperature T0 = 1533 K, and a temperature-gradient exponent q = 0.46 suggesting a flared disk geometry. Conclusions: The distance and luminosity of V921 Sco are not well known. If we assume a distance of 1150 ± 150 pc, we derive a ring-fit radius of ~2.4 AU, which is approximately consistent with the computed temperature-gradient disk model with inner and outer ring radii of 1.45 and 8.5 AU, respectively. If the inner radius of V921 Sco is more compact than the sublimation radius, this compact observed size can be explained by emitting material (e.g., a gaseous disk) inside the dust sublimation radius, as suggested for several other B[e] stars. Based on observations made with ESO telescopes at Paranal Observatory under program ID (MPG-VISA GTO): 079.C-0212(A).

  14. 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.

  15. Post-discharge compliance to venous thromboembolism prophylaxis in high-risk orthopaedic surgery: results from the ETHOS registry.

    PubMed

    Bergqvist, David; Arcelus, Juan I; Felicissimo, Paulo

    2012-02-01

    Venous thromboembolism (VTE) risk persists for several weeks following high-risk orthopaedic surgery (HROS). The ETHOS registry evaluated post-operative VTE prophylaxis prescribed, and actual VTE prophylaxis received, compared with the 2004 American College of Chest Physicians (ACCP) guidelines in HROS patients. We performed a subanalysis of ETHOS to assess patient compliance with ACCP-adherent prophylaxis after discharge and the factors predicting poor compliance. Consecutive patients undergoing hip fracture surgery, total hip arthroplasty, or knee arthroplasty were enrolled at discharge from 161 centres in 17 European countries if they had received adequate in-hospital VTE prophylaxis. Data on prescribed and actual prophylaxis received were obtained from hospital charts and patient post-discharge diaries. Good compliance was defined as percentage treatment intake ≥80% with no more than two consecutive days without treatment. A total of 3,484 patients (79.4%) received ACCP-adherent anticoagulant prescription at discharge and 2,999 (86.0%) had an evaluable patient diary. In total, 87.7% of evaluable patients were compliant with prescribed treatment after discharge. The most common reason for non-compliance (33.4%) was "drug was not bought". Injection of treatment was not a barrier to good compliance. Main factors affecting compliance related to purchase of and access to treatment, patient education, the person responsible for administering injections, country, and type of hospital ward at discharge. Within our study population, patient compliance with ACCP-adherent thromboprophylaxis prescribed at discharge was good. Improvements in patient education and prescribing practices at discharge may be important in further raising compliance levels in high-risk orthopaedic surgery patients.

  16. Adherence of Clostridium thermocellum to cellulose.

    PubMed Central

    Bayer, E A; Kenig, R; Lamed, R

    1983-01-01

    The adherence of Clostridium thermocellum, a cellulolytic, thermophilic anaerobe, to its insoluble substrate (cellulose) was studied. The adherence phenomenon was determined to be selective for cellulose. The observed adherence was not significantly affected by various parameters, including salts, pH, temperature, detergents, or soluble sugars. A spontaneous adherence-defective mutant strain (AD2) was isolated from the wild-type strain YS. Antibodies were prepared against the bacterial cell surface and rendered specific to the cellulose-binding factor (CBF) by adsorption to mutant AD2 cells. By using these CBF-specific antibodies, crossed immunoelectrophoresis of cell extracts revealed a single discrete precipitation peak in the parent strain which was absent in the mutant. This difference was accompanied by an alteration in the polypeptide profile whereby sonicates of strain YS contained a 210,000-molecular-weight band which was missing in strain AD2. The CBF antigen could be removed from cell extracts by adsorption to cellulose. A combined gel-overlay--immunoelectrophoretic technique demonstrated that the cellulose-binding properties of the CBF were accompanied by carboxymethylcellulase activity. During the exponential phase of growth, a large part of the CBF antigen and related carboxymethylcellulase activity was associated with the cells of wild-type strain YS. However, the amounts decreased in stationary-phase cells. Cellobiose-grown mutant AD2 cells lacked the cell-associated CBF, but the latter was detected in the extracellular fluid. Increased levels of CBF were observed when cells were grown on cellulose. In addition, mutant AD2 regained cell-associated CBF together with the property of cellulose adherence. The presence of the CBF antigen and related adherence characteristics appeared to be a phenomenon common to other naturally occurring strains of this species. Images PMID:6630152

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

    PubMed Central

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

    2015-01-01

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

  18. [Challenges of adolescents' adherence to therapy].

    PubMed

    Brand, P L P; Kaptein, A A; Janssens, L P F; Klok, T

    2016-01-01

    Non-adherence occurs at any age, in all chronic diseases, and has a major impact on clinical outcomes. Non-adherence is primarily determined by perceptions of illness and medication beliefs. During puberty, adolescents attain independence from their parents and attach to their peers. This complicates successful self-management of chronic illness, because the adolescents avoid standing out from their peers. Discussion of barriers hindering successful self-management in adolescents can be promoted by seeing the patient alone, without the parents being present, and by acknowledging the patient's independence and responsibilities. PMID:27581866

  19. [Supporting adherence to drug therapy in psychiatry].

    PubMed

    Oksanen, Jorma

    2015-01-01

    Maintenance therapy to reduce the risk of recurrence is an essential part of treatment of schizophrenia, bipolar disorder and major depressive disorder, but poor treatment adherence is common, impairing the treatment outcome. Improvement in the adherence to drug therapy requires a good therapeutic relationship. The patient and her/his family must be provided with information about the illness and its treatment. Drug therapy must be optimized on an individual basis. The use of long-acting antipsychotic injections should be encouraged. Regular contact with patients under long-term treatment must be maintained. The use of experts by experience is an effective supportive measure. PMID:26485936

  20. [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.

  1. The International Quotidian Dialysis Registry: annual report 2006.

    PubMed

    Nesrallah, Gihad E; Suri, Rita S; Zoller, Rezso; Garg, Amit X; Moist, Louise M; Lindsay, Robert M

    2006-07-01

    Interest in short daily and nocturnal hemodialysis (HD) regimens continues to grow worldwide. Despite growing optimism that these therapies will afford better patient outcomes over conventional HD, the current literature has not been viewed as sufficiently compelling to affect widespread implementation in most jurisdictions. Before these therapies can gain wider acceptance, larger and more rigorous studies will likely be needed. In June 2004, the Quotidian Dialysis Registry, based at the Lawson Health Research Institute at the University of Western Ontario, Canada, began recruiting patients across North America. By using an Internet-based data entry platform, patients from various centers worldwide will eventually be recruited, and studied prospectively. This paper constitutes the second annual update on patient and center recruitment, patient and treatment characteristics, and future directions for the registry. PMID:16805881

  2. 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. PMID:20889074

  3. A preventive registry for hereditary nonpolyposis colorectal cancer.

    PubMed

    Madlensky, L; Berk, T C; Bapat, B V; McLeod, R S; Couture, J; Baron, D; Hiruki, T; Redston, M; Cohen, Z; Gallinger, S

    1995-07-01

    Hereditary nonpolyposis colorectal cancer (HNPCC) is a genetic disorder characterized by a strong family history of colorectal and extracolonic cancers, usually at a young age. This article presents a new provincial service for families with HNPCC. The Steve Atanas Stavro Familial Gastrointestinal Cancer Registry at Mount Sinai Hospital is accruing patients that meet a set of criteria establishing a putative diagnosis of HNPCC. The objectives of the Registry are to develop and assess patient pedigrees, to coordinate screening procedures for at-risk persons, to maintain a prospective database of patient information, to provide education and support for families and to contribute to research. To date, surgeons and patients are the most common referral sources, while oncologists and geneticists are the least common. The ultimate goal of the HNPCC service is the secondary prevention of cancer and a corresponding decrease in mortality for HNPCC family members. PMID:8853507

  4. 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.

  5. Evaluation of adherence to immunosuppressive drugs in kidney transplantation by control of medication dispensing.

    PubMed

    Brahm, M M T; Manfro, R C; Mello, D; Cioato, S; Gonçalves, L F S

    2012-10-01

    Nonadherence to immunosuppressive medications represents a burden to organ transplantation being associated with rejection episodes and graft loss. In this cross-sectional study we evaluated the prevalence and risk factors for nonadherence in kidney transplant patients by measuring the retrieval of the immunosuppressive drugs in the registry kept by the state Rio Grande do Sul public health system. We considered nonadherence the failure to retrieval of medication at least one time over a 1-year period of evaluation. In 288 patients evaluated, the frequency of failure to retrieve was 58.7%. Being fully employed (66.4% × 33.6%, P = .008) and younger age at transplantation (39 ± 13 × 46 ± 11, P = .011) were associated with nonadherence. Multivariate analysis showed a greater prevalence ratio (PR) of non- adherence in patients using tacrolimus. Estimated glomerular filtration rate was significantly lower in the nonadherence groups as compared with adherent groups (45.3 ± 21.6 × 51.3 ± 19.4, P = .016). In conclusion, we found a high prevalence of nonadherence to immunosuppressive drugs with association to active working situation and use of tacrolimus. Importantly, glomerular filtration rate was found to be lower in nonadherent patients.

  6. 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

    ... 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 and... the job registry, please contact the iCERT System Team, Office of Foreign Labor ] Certification...

  7. 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

  8. 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

  9. 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.

  10. 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.

  11. VTE Registry: What Can Be Learned from RIETE?

    PubMed

    Tzoran, Inna; Brenner, Benjamin; Papadakis, Manolis; Di Micco, Pierpaolo; Monreal, Manuel

    2014-10-01

    The Registro Informatizado de Enfermedad TromboEmbólica (RIETE Registry) is an ongoing, international, prospective registry of consecutive patients with acute venous thromboembolism (VTE) designed to gather and analyze data on treatment patterns and outcomes in patients with acute VTE. It started in Spain in 2001, and 6 years later the database was translated into English with the aim to expand the Registry to other countries. In contrast to randomized controlled trials, there is no imposed experimental intervention: the management is determined solely by physicians. Thus, it provides data on patients with VTE in a real-world situation with an unselected patient population. Data from RIETE are hypothesis-generating and provide feedback from real-world clinical situations. So far, we learned about the natural history of VTE in patients with relative or absolute contraindications to anticoagulant therapy. We also learned interesting aspects on the natural history of VTE, and we built a number of prognostic scores to identify VTE patients at low, moderate, or high risk for adverse outcome.

  12. 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. PMID:27518292

  13. Apheresis technologies and clinical applications: the 2007 International Apheresis Registry.

    PubMed

    Malchesky, Paul S; Koo, Anna P; Skibinski, Christine I; Hadsell, Angela T; Rybicki, Lisa A

    2010-02-01

    The developments in apheresis technologies and techniques and their clinical applications worldwide are technologically, sociologically, and economically motivated. As in the past apheresis surveys, the statistics have highlighted both the differences by geographic region in clinical practice and in the type of technologies utilized. While a national view of apheresis is very important, an international view may be more representative overall of this therapeutic modality than national results that are highly dependent on the local economics and the available technologies. These regional differences have provided a basis for scientific and clinical assessment of these apheresis technologies and their clinical outcomes, and have impacted the marketing and business developments of new technologies worldwide. The results of the International Apheresis Registry for 2007 report data from 20 centers on five continents. The survey collected data exclusively via a secure internet website on 1735 patients for a total of 6787 treatments. As with our prior registry for 2005, information on stem cell infusions was gathered. Information collected included patients demographics, medical history, treatment diagnoses, treatment specifics (type, methodology, access type, anticoagulants, drugs, and equipment usage), side effects, clinical response, and payment provider. As in prior International Apheresis Registries for 1983, 2000, 2002, and 2005, the survey results highlight the regional differences in apheresis usage and treatment methodologies indicating that an international overview of apheresis may be more representative of the impact of this therapeutic modality.

  14. Online registry for mutations in hereditary amyloidosis including nomenclature recommendations.

    PubMed

    Rowczenio, Dorota M; Noor, Islam; Gillmore, Julian D; Lachmann, Helen J; Whelan, Carol; Hawkins, Philip N; Obici, Laura; Westermark, Per; Grateau, Gilles; Wechalekar, Ashutosh D

    2014-09-01

    Hereditary systemic amyloidosis comprises a group of rare monogenic diseases inherited in an autosomal dominant fashion. It is associated with mutations in genes encoding eight different proteins, including transthyretin, apolipoprotein AI, apolipoprotein AII, lysozyme, fibrinogen A α-chain, cystatin C, gelsolin and beta-2-microglobulin. With support from the EU FP6 EURAMY project we have designed an online registry of genes and mutations in hereditary amyloidosis including their associated clinical phenotypes, with a view to having a single free online portal for the collection and distribution of this information. Users can search the registry by either mutation, phenotype or authors who have published or submitted mutations. It provides a submission form for reporting newly identified mutations. We also wanted to introduce nomenclature which complies with recommendations set out by Human Genome Variation Society and HUGO Gene Nomenclature Committee for description of new and known genetic variants. We hope this registry would be a useful and convenient tool for the medical and scientific community. PMID:25044787

  15. Apheresis technologies and clinical applications: the 2005 International Apheresis Registry.

    PubMed

    Malchesky, Paul S; Koo, Anna P; Roberson, Gerald A; Hadsell, Angela T; Rybicki, Lisa A

    2007-10-01

    The developments in apheresis technologies and techniques and their clinical applications worldwide are technologically, sociologically, and economically motivated. In past apheresis surveys the statistics have highlighted both the differences by geographic region in clinical practice and in the types of technologies utilized. While a national view of apheresis is very important, an international view may be more representative overall of this therapeutic modality than national results that are highly dependent on the local economics and the available technologies. These regional differences have provided a basis for scientific and clinical assessment of these apheresis technologies and their clinical outcomes, and have impacted the marketing and business developments of new technologies worldwide. The results of the International Apheresis Registry for 2005 reporting from 22 centers on 5 continents are presented. The survey collected data exclusively via a secure internet website on 1133 patients for a total of 6501 treatments. Unlike our prior registries, information on stem cell infusions was gathered. Information gathered included patient demographics, medical history, treatment diagnoses, treatment specifics (type, methodology, access type, anticoagulants, drugs, and equipment usage), side-effects, clinical response, and payment provider. As in the prior International Apheresis Registries for 1983, 2000, and 2002 the survey results highlight the regional differences in apheresis usage and treatment methodologies, indicating that an international overview of apheresis may be more representative of the impact of this therapeutic modality.

  16. 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.

  17. Effect of selective serotonin reuptake inhibitors use on endocrine therapy adherence and breast cancer mortality: a population-based study.

    PubMed

    Valachis, Antonis; Garmo, Hans; Weinman, John; Fredriksson, Irma; Ahlgren, Johan; Sund, Malin; Holmberg, Lars

    2016-09-01

    The purpose of the study was to investigate whether the concomitant use of selective serotonin reuptake inhibitors (SSRI) with tamoxifen influences the risk of death due to breast cancer, and we also investigated the association between SSRI use and adherence to oral endocrine therapy (ET). We analyzed data from BCBaSe Sweden, which is a database created by the data linkage of Registries from three different regions of Sweden. To investigate the association between ET adherence and SSRI use, we included all women who were diagnosed with non-distant metastatic ER-positive invasive breast cancer from July 2007 to July 2011 and had at least one dispensed prescription of oral tamoxifen or aromatase inhibitor. To investigate the role of concurrent administration of SSRI and tamoxifen on breast cancer prognosis, we performed a nested case-control study. In the adherence cohort, 9104 women were included in the analyses. Women who received SSRI, either before or after breast cancer diagnosis, were at higher risk for low adherence to ET. However, when the overlapping period between SSRI use and ET was >50 %, no excess risk for low adherence was observed. Non-adherence (<80 %) to ET was significantly associated with worse breast cancer survival (OR 4.07; 95 % CI 3.27-5.06). In the case-control study, 445 cases and 11125 controls were included. The concomitant administration of SSRI and tamoxifen did not influence breast cancer survival, neither in short-term (OR 1.41; 95 % CI 0.74-2.68) nor in long-term SSRI users (OR 0.85; 95 % CI 0.35-2.08). Concomitant SSRI and tamoxifen use does not seem to increase risk for death due to breast cancer. Given the positive association between continuing antidepressive pharmacotherapy for a longer period of time and adherence to ET, it is essential to capture and treat depression in breast cancer patients to secure adherence to ET. PMID:27492739

  18. 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...

  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. 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…

  1. The toxicology investigators consortium case registry-the 2013 experience.

    PubMed

    Rhyee, Sean H; Farrugia, Lynn; Wiegand, Timothy; Smith, Eric A; Wax, Paul M; Brent, Jeffrey

    2014-12-01

    The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. This report summarizes the Registry data for 2013. A query of the ToxIC Registry was carried out for the dates of January 1 through December 31, 2013. Specific data reviewed for analysis included demographics (age, gender), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms and clinical findings, and treatment. A total of 8,598 cases were entered into the Registry in 2013. Females accounted for 49.2 % of cases, males for 47.7 %, and gender was not reported in 3.1 %. The majority of patients (63.4 %) were adults between the ages of 19 and 65 years. There were 93 fatalities (1.1 %). Most referrals for medical toxicology consultation originated from the emergency department (59.7 %) or inpatient services (16.7 %). Exposures to pharmaceutical products (intentional and unintentional) made up 50.0 % of cases. Illicit drug abuse (8.0 %) and adverse drug reactions (ADRs) (4.8 %) were the next most frequent reasons for consultation. Similar to past years, nonopioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Symptoms or clinical findings were documented in 71.1 % of patients. Of all cases, 54.6 % required some form of medical treatment (antidotes, antivenom, chelation, specific types of supportive care). This report serves as a comprehensive survey of medical toxicology practice within participating institutions. Prior trends continued to apply this year and indicate analgesic (opioid and nonopioid), sedative-hypnotic/muscle relaxant agents, illicit drug use, and ADRs continue to be major toxicological problems. Cases requiring medical toxicology consultation in 2013 predominantly involved pharmaceuticals and illicit drugs. Reasons for these drug

  2. The toxicology investigators consortium case registry-the 2013 experience.

    PubMed

    Rhyee, Sean H; Farrugia, Lynn; Wiegand, Timothy; Smith, Eric A; Wax, Paul M; Brent, Jeffrey

    2014-12-01

    The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. This report summarizes the Registry data for 2013. A query of the ToxIC Registry was carried out for the dates of January 1 through December 31, 2013. Specific data reviewed for analysis included demographics (age, gender), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms and clinical findings, and treatment. A total of 8,598 cases were entered into the Registry in 2013. Females accounted for 49.2 % of cases, males for 47.7 %, and gender was not reported in 3.1 %. The majority of patients (63.4 %) were adults between the ages of 19 and 65 years. There were 93 fatalities (1.1 %). Most referrals for medical toxicology consultation originated from the emergency department (59.7 %) or inpatient services (16.7 %). Exposures to pharmaceutical products (intentional and unintentional) made up 50.0 % of cases. Illicit drug abuse (8.0 %) and adverse drug reactions (ADRs) (4.8 %) were the next most frequent reasons for consultation. Similar to past years, nonopioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Symptoms or clinical findings were documented in 71.1 % of patients. Of all cases, 54.6 % required some form of medical treatment (antidotes, antivenom, chelation, specific types of supportive care). This report serves as a comprehensive survey of medical toxicology practice within participating institutions. Prior trends continued to apply this year and indicate analgesic (opioid and nonopioid), sedative-hypnotic/muscle relaxant agents, illicit drug use, and ADRs continue to be major toxicological problems. Cases requiring medical toxicology consultation in 2013 predominantly involved pharmaceuticals and illicit drugs. Reasons for these drug

  3. 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

  4. Rationale and Design of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) Registry

    PubMed Central

    2010-01-01

    Background Although the management of thoracic aortic aneurysms (TAAs) has improved significantly, patients presenting with aortic dissections, rupture or other acute complications of TAAs continue to suffer high rates of morbidity and mortality. Accumulating data have indicated that many TAAs are due to underlying gene mutations. A comprehensive approach to the study of TAAs resulting from genetic mutations is needed to translate this information into advances in treatment. Objective The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) was established to provide a biospecimen inventory and bioinformatics infrastructure to enable research to advance the clinical management of genetically-triggered TAAs and related complications. Methods The GenTAC Registry is a longitudinal observational cohort study enrolling patients with conditions related to genetically-induced TAAs from five regional clinical centers in the United States. Results Over 700 subjects with associated clinical histories, physical examinations, imaging data, and biospecimens have been enrolled in the Registry to date. Enrollment is expected to continue until September 2010. Total enrollment of nearly 3,000 subjects is expected. No interim analysis has yet been undertaken. Conclusions GenTAC has been established to facilitate studies by GenTAC investigators and others that will advance multiple scientific frontiers in thoracic aortic disease. Genotypic, proteomic, clinical, and imaging data will be integrated systematically with outcomes data to determine the optimal clinical management of patients suffering from genetically-induced TAAs. PMID:19185640

  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. Eikenella corrodens adherence to human buccal epithelial cells.

    PubMed Central

    Yamazaki, Y; Ebisu, S; Okada, H

    1981-01-01

    The mechanism of Eikenella corrodens adherence to human buccal epithelial cells in vitro was studied. Initial experiments to determine the optimal conditions for adherence of E. corrodens to buccal epithelial cells showed that adherence was dependent on time, temperature, bacterial concentration, and pH. Different strains of E. corrodens varied in their ability to adhere, and strain 1073 showed the greatest ability in adherence. Strain 1073 was selected for studies of adherence mechanisms. Trypsin treatment or heating (100 degrees C, 10 min) of the bacterial cells abolished their capacity to adhere to buccal epithelial cells. Treatment of buccal epithelial cells with trypsin also abolished adherence of E. corrodens 1073, whereas neuraminidase treatment of buccal epithelial cells enhanced the adherence. The adherence was inhibited by ethylenediaminetetraacetic acid and restored by adding Ca2+. The adherence was remarkably inhibited by sugars containing D-galactose and n-acetyl-D-galactosamine. Treatment of neuraminidase-treated epithelial cells with sodium metaperiodate or alpha- and beta-galactosidase did not decrease the adherence. These data suggest that adherence of E. corrodens 1073 to human buccal epithelial cells may require the interaction of lectin-like proteins on the bacterial surface with galactose-like receptors on the surface of epithelial cells. PMID:6260661

  7. 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

  8. 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.

  9. Study of the sub-AU disk of the Herbig B[e] star HD 85567 with near-infrared interferometry

    NASA Astrophysics Data System (ADS)

    Vural, J.; Kraus, S.; Kreplin, A.; Weigelt, G.; Fossat, E.; Massi, F.; Perraut, K.; Vakili, F.

    2014-09-01

    Context. The structure of the inner disk of Herbig Be stars is not well understood. The continuum disks of several Herbig Be stars have inner radii that are smaller than predicted by models of irradiated disks with optically thin holes. Aims: We study the size of the inner disk of the Herbig B[e] star HD 85567 and compare the model radii with the radius suggested by the size-luminosity relation. Methods: The object was observed with the AMBER instrument of the Very Large Telescope Interferometer. We obtained K-band visibilities and closure phases. These measurements are interpreted with geometric models and temperature-gradient models. Results: Using several types of geometric star-disk and star-disk-halo models, we derived inner ring-fit radii in the K band that are in the range of 0.8-1.6 AU. Additional temperature-gradient modeling resulted in an extended disk with an inner radius of 0.67+0.51-0.21 AU, a high inner temperature of 2200+750-350 K, and a disk inclination of 53+15-11 °. Conclusions: The derived geometric ring-fit radii are approximately 3-5 times smaller than that predicted by the size-luminosity relation. The small geometric and temperature-gradient radii suggest optically thick gaseous material that absorbs stellar radiation inside the dust disk. Based on observations made with ESO telescopes at the La Silla Paranal Observatory under program IDs 080.C-0541(C), 082.C-0893(A), 084.C-0848(B).Appendix A is available in electronic form at http://www.aanda.org

  10. Medication Adherence in Patients with Bipolar Disorder: A Comprehensive Review.

    PubMed

    Levin, Jennifer B; Krivenko, Anna; Howland, Molly; Schlachet, Rebecca; Sajatovic, Martha

    2016-09-01

    Poor medication adherence is a pervasive problem that causes disability and suffering as well as extensive financial costs among individuals with bipolar disorder (BD). Barriers to adherence are numerous and cross multiple levels, including factors related to bipolar pathology and those unique to an individual's circumstances. External factors, including treatment setting, healthcare system, and broader health policies, can also affect medication adherence in people with BD. Fortunately, advances in research have suggested avenues for improving adherence. A comprehensive review of adherence-enhancement interventions for the years 2005-2015 is included. Specific bipolar adherence-enhancement approaches that target knowledge gaps, cognitive patterns, specific barriers, and motivation may be helpful, as may approaches that capitalize on technology or novel drug-delivery systems. However, much work remains to optimally facilitate long-term medication adherence in people with BD. For adherence-enhancement approaches to be widely adapted, they need to be easily accessible, affordable, and practical. PMID:27435356

  11. 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

  12. 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

  13. Overactive bladder: strategies to ensure treatment compliance and adherence

    PubMed Central

    Dhaliwal, Prabhpreet; Wagg, Adrian

    2016-01-01

    Overactive bladder is a common, debilitating condition for many patients who may benefit from pharmacological management of their condition. However, adherence to medication in this condition is markedly worse than other chronic medical conditions. This review explores what is known about persistence and the factors which influence medication adherence for overactive bladder, those factors that might be modifiable to improve adherence, and the measures the health care provider can take to optimize adherence to therapy and thereby improve treatment outcomes. PMID:27350744

  14. 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

  15. A comprehensive stroke center patient registry: advantages, limitations, and lessons learned

    PubMed Central

    Siegler, James E.; Boehme, Amelia K.; Dorsey, Adrianne M.; Monlezun, Dominique J.; George, Alex J.; Shaban, Amir; Bockholt, H. Jeremy; Albright, Karen C.; Martin-Schild, Sheryl

    2015-01-01

    Introduction The use of a medical data registry allows institutions to effectively manage information for many different investigations related to the registry, as well as evaluate patient's trends over time, with the ultimate goal of recognizing trends that may improve outcomes in a particular patient population. Methods The purpose of this article is to illustrate our experience with a stroke patient registry at a comprehensive stroke center and highlight advantages, disadvantages, and lessons learned in the process of designing, implementing, and maintaining a stroke registry. We detail the process of stroke registry methodology, common data element (CDE) definitions, the generation of manuscripts from a registry, and the limitations. Advantages The largest advantage of a registry is the ability to prospectively add patients, while allowing investigators to go back and collect information retrospectively if needed. The continuous addition of new patients increases the sample size of studies from year to year, and it also allows reflection on clinical practices from previous years and the ability to investigate trends in patient management over time. Limitations The greatest limitation in this registry pertains to our single-entry technique where multiple sites of data entry and transfer may generate errors within the registry. Lessons Learned To reduce the potential for errors and maximize the accuracy and efficiency of the registry, we invest significant time in training competent registry users and project leaders. With effective training and transition of leadership positions, which are continuous and evolving processes, we have attempted to optimize our clinical research registry for knowledge gain and quality improvement at our center. PMID:26913217

  16. 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

  17. Measuring adherence to treatment of paediatric HIV/AIDS.

    PubMed

    Naar-King, S; Frey, M; Harris, M; Arfken, C

    2005-04-01

    Parent, child, physician report and pill counts were used to measure adherence in paediatric HIV. Relationships to viral load were assessed. Pill counts were considered invalid. Adherence measures did not correlate with one another. Physicians reported lower adherence than parents, but parent and physician report correlated with viral load. The clinical and research utility of the various measures are discussed.

  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. 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…

  20. Pelvic Floor Disorders Registry: Study Design and Outcome Measures.

    PubMed

    Weber LeBrun, Emily; Adam, Rony A; Barber, Matthew D; Boyles, Sarah Hamilton; Iglesia, Cheryl B; Lukacz, Emily S; Moalli, Pamela; Moen, Michael D; Richter, Holly E; Subak, Leslee L; Sung, Vivian W; Visco, Anthony G; Bradley, Catherine S

    2016-01-01

    Pelvic floor disorders affect up to 24% of adult women in the United States, and many patients with pelvic organ prolapse (POP) choose to undergo surgical repair to improve their quality of life. While a variety of surgical repair approaches and techniques are utilized, including mesh augmentation, there is limited comparative effectiveness and safety outcome data guiding best practice. In conjunction with device manufacturers, federal regulatory organizations, and professional societies, the American Urogynecologic Society developed the Pelvic Floor Disorders Registry (PFDR) designed to improve the quality of POP surgery by facilitating quality improvement and research on POP treatments. The PFDR will serve as a resource for surgeons interested in benchmarking and outcomes data and as a data repository for Food and Drug Administration-mandated POP surgical device studies. Provider-reported clinical data and patient-reported outcomes will be collected prospectively at baseline and for up to 3 years after treatment. All data elements including measures of success, adverse events, and surgeon characteristics were identified and defined within the context of the anticipated multifunctionality of the registry, and with collaboration from multiple stakeholders. The PFDR will provide a platform to collect high-quality, standardized patient-level data from a variety of nonsurgical (pessary) and surgical treatments of POP and other pelvic floor disorders. Data from this registry may be used to evaluate short- and longer-term treatment outcomes, patient-reported outcomes, and complications, as well as to identify factors associated with treatment success and failure with the overall goal of improving the quality of care for women with these conditions.

  1. 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.

  2. 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.

  3. 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.

  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. PMID:26974329

  5. Global polar geospatial registry centre system and its realization

    NASA Astrophysics Data System (ADS)

    He, Jie; Wang, Wei; Chen, Nengcheng; Chen, Zeqiang; Chen, Jiaying

    2008-12-01

    Antarctica plays a key role in many scientific questions, of which those related to global climate change are probably the most prominent examples. There are many researches on Antarctic are carried out at present, and some special institutes sponsored by public and private communities are responsible for antarctica data management and maintenance. Antarctic Spatial Data Infrastructure (AntSDI) [1]sponsored by SCAR's Standing Committee on Antarctic Geographic Information (SC-AGI) is the one responsible for Antarctica spatial data maintenance and sharing by means of OGC standard and specification. Antarctica Spatial Data Infrastructure (AntSDI) has already collected huge volumes of geospatial data and offer an opening geospatial information service. In order to management and use Geospatial data efficiently, and enable most of the users can access to Geospatical data and service at will, we firstly must registry data and service into one or more registry center, then we should construct a building system which can supply users a uniform interface to access data and service in registry center and user also can add their own data and service to system and become part of system's capability. in this paper we present GeoAnt, a prototype interoperable AntSDI building system. GeoAnt is a three-tier standard-based open geospatial web service system which fully automates data discovery, access, and integration steps of the geospatial information discovery process under the interoperable service framework. The paper discusses the system architecture, the individual components of the system and the use of the system in the international project- Grove Mountains GIService Portal (GMGP).

  6. 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

  7. Subpopulations in purified platelets adhering on glass.

    PubMed

    Donati, Alessia; Gupta, Swati; Reviakine, Ilya

    2016-01-01

    Understanding how platelet activation is regulated is important in the context of cardiovascular disorders and their management with antiplatelet therapy. Recent evidence points to different platelet subpopulations performing different functions. In particular, procoagulant and aggregating subpopulations have been reported in the literature in platelets treated with the GPVI agonists. How the formation of platelet subpopulations upon activation is regulated remains unclear. Here, it is shown that procoagulant and aggregating platelet subpopulations arise spontaneously upon adhesion of purified platelets on clean glass surfaces. Calcium ionophore treatment of the adhering platelets resulted in one platelet population expressing both the procoagulant and the adherent population markers phosphatidylserine and the activated form of GPIIb/IIIa, while all of the platelets expressed CD62P independently of the ionophore treatment. Therefore, all platelets have the capacity to express all three activation markers. It is concluded that platelet subpopulations observed in various studies reflect the dynamics of the platelet activation process. PMID:27338300

  8. Medication adherence among older adults with schizophrenia.

    PubMed

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

    2013-02-01

    Older adults with schizophrenia are a growing segment of the population, yet their physical and mental health status is extremely poor. This article 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 effect on participants' 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.

  9. Ethics in adherence promotion and monitoring.

    PubMed

    Rand, C S; Sevick, M A

    2000-10-01

    In evaluating and intervening to increase adherence to medical treatments, clinicians and researchers must address ethical issues pertaining to best interest, autonomy, and privacy. "Best interest" refers to the notion that health-care practitioners act in a manner that produces benefits or good outcomes for the patients in their care. "Autonomy" refers to the patient's right to determine whether or not they will accept medical treatment or participate in a clinical study. "Nonmaleficence" refers to the clinician's or researcher's responsibility to "do no harm." "Privacy" refers to the notion that researchers and clinicians promise not to divulge personal information about the patients in their care. Adherence monitoring and promotion pose ethical challenges to researchers and clinicians, which are the topic of this paper. Control Clin Trials 2000;21:241S-247S

  10. Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research.

    PubMed

    Zachary, Iris; Boren, Suzanne A; Simoes, Eduardo; Jackson-Thompson, Jeannette; Davis, J Wade; Hicks, Lanis

    2015-01-01

    Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries' data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible. PMID:26392844

  11. 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.

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

    PubMed Central

    Izquierdo, J N; Schoenbach, V J

    2000-01-01

    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. PMID:10800415

  13. PARENT joint action: increasing the added value of patient registries in a cross-border setting.

    PubMed

    Meglič, Matic; Doupi, Persephone; Pristaš, Ivan; Skalkidis, Yannis; Zaletel, Metka; Orel, Andrej

    2013-01-01

    Patient registries are poorly interoperable and as a result data exchange or aggregation across organizations, regions and countries for secondary purposes (i.e. research and public health) is difficult to perform. PARENT Joint Action aims to provide EU Member States with a set of guidelines, recommendations and tools to support setting-up, management and governance of interoperable patient registries, thus helping EU Member States to drive down cost and interoperability risks of patient registries as well as improving secondary us-age of registry data in a cross-border setting. PMID:23920935

  14. 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. PMID:26973060

  15. 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

  16. Adherence with drug therapy in the rheumatic diseases Part one: a review of adherence rates.

    PubMed

    Hill, Jackie

    2005-01-01

    Drug therapy plays a major role in the management of many rheumatic diseases and is particularly important in rheumatoid arthritis (RA) because of the significant rates of morbidity and mortality (Pincus, 1995). Understanding of the pathogenesis of RA has led to the development of new and more effective drugs (Emery et al., 1999), but the ultimate efficacy of any drug therapy depends upon the patient's decision to take it. There is widespread agreement that many people with rheumatic disease do not adhere to their medication regimens (Deyo et al., 1981; Belcon et al., 1984; Pullar et al., 1988; Hill et al., 2001). Research has demonstrated that 50% of women taking hormone replacement therapy for the prevention of osteoporosis discontinue treatment after a year (Fordham, 2000) and similar rates of discontinuation are found in other chronic diseases (Haynes et al., 1996, 2000). This is bewildering as, in asymptomatic illnesses such as hypertension and diabetes, the expectation is that levels of adherence would be lower than in diseases where pain and stiffness are present. The picture becomes even more confusing when we consider the findings from a recent multi-country study of RA, which found no association between adherence and disease severity, nor with the treatment prescribed (Viller et al., 1999). In chronic disease poor adherence is commonplace. The World Health Organization (WHO) recognizes this and has recently stated that 'poor adherence to treatment of chronic diseases is a worldwide problem of striking magnitude' and cites adherence to long-term therapy for chronic illnesses in developed countries averaging just 50% (WHO, 2003). The first part of this two part review focuses on adherence with drug therapy, and the second part discusses different methods of measuring it. PMID:17041995

  17. Measurement of adherent cell mass and growth

    PubMed Central

    Park, Kidong; Millet, Larry J.; Kim, Namjung; Li, Huan; Jin, Xiaozhong; Popescu, Gabriel; Aluru, N. R.; Hsia, K. Jimmy; Bashir, Rashid

    2010-01-01

    The characterization of physical properties of cells such as their mass and stiffness has been of great interest and can have profound implications in cell biology, tissue engineering, cancer, and disease research. For example, the direct dependence of cell growth rate on cell mass for individual adherent human cells can elucidate the mechanisms underlying cell cycle progression. Here we develop an array of micro-electro-mechanical systems (MEMS) resonant mass sensors that can be used to directly measure the biophysical properties, mass, and growth rate of single adherent cells. Unlike conventional cantilever mass sensors, our sensors retain a uniform mass sensitivity over the cell attachment surface. By measuring the frequency shift of the mass sensors with growing (soft) cells and fixed (stiff) cells, and through analytical modeling, we derive the Young’s modulus of the unfixed cell and unravel the dependence of the cell mass measurement on cell stiffness. Finally, we grew individual cells on the mass sensors and measured their mass for 50+ hours. Our results demonstrate that adherent human colon epithelial cells have increased growth rates with a larger cell mass, and the average growth rate increases linearly with the cell mass, at 3.25%/hr. Our sensitive mass sensors with a position-independent mass sensitivity can be coupled with microscopy for simultaneous monitoring of cell growth and status, and provide an ideal method to study cell growth, cell cycle progression, differentiation, and apoptosis. PMID:21068372

  18. Adherence to asthma guidelines in general practices.

    PubMed

    Roghmann, M C; Sexton, M

    1999-06-01

    Adherence to asthma practice guidelines is low. Improved compliance could potentially improve care of patients with asthma. The purpose of this study was to determine if patients managed in a general practice with an associated asthma clinic are more likely to use asthma medications according to clinical practice guidelines than patients managed in the general surgery of the practice. A cross-sectional study of adult asthmatics, aged 18-55 years, was conducted in six British general practices. Prescription data on all asthma medication was collected for a 6-month period. Information on asthma clinic attendance, age, sex, employment status, other medical illness, and how patients used their inhaled beta2-agonist was collected through questionnaire. The prescription data for asthma medication and patient use of inhaled beta2-agonist were compared to the British Thoracic Society's (BTS) Guidelines for Management of Asthma in Adults to determine if the patient's asthma medication regimen was appropriate. There was no significant association found between appropriate asthma medication and asthma clinic attendance or other patient characteristics. Adherence to the BTS guidelines was low. Fifty-eight percent of the asthma patients used asthma medication regimens that were not consistent with the BTS guidelines published 1 year earlier. Adherence to the BTS guidelines was low regardless of patient characteristics, including asthma clinic attendance, age, sex, employment status, other medical illness, or individual practice. These findings underscore the need to document the utility of clinical practice guidelines which may improve physician compliance.

  19. Adherent Raindrop Modeling, Detectionand Removal in Video.

    PubMed

    You, Shaodi; Tan, Robby T; Kawakami, Rei; Mukaigawa, Yasuhiro; Ikeuchi, Katsushi

    2016-09-01

    Raindrops adhered to a windscreen or window glass can significantly degrade the visibility of a scene. Modeling, detecting and removing raindrops will, therefore, benefit many computer vision applications, particularly outdoor surveillance systems and intelligent vehicle systems. In this paper, a method that automatically detects and removes adherent raindrops is introduced. The core idea is to exploit the local spatio-temporal derivatives of raindrops. To accomplish the idea, we first model adherent raindrops using law of physics, and detect raindrops based on these models in combination with motion and intensity temporal derivatives of the input video. Having detected the raindrops, we remove them and restore the images based on an analysis that some areas of raindrops completely occludes the scene, and some other areas occlude only partially. For partially occluding areas, we restore them by retrieving as much as possible information of the scene, namely, by solving a blending function on the detected partially occluding areas using the temporal intensity derivative. For completely occluding areas, we recover them by using a video completion technique. Experimental results using various real videos show the effectiveness of our method.

  20. [Adherence to chronic medication: also a frequent problem in Belgium!].

    PubMed

    Liekens, S; Hulshagen, L; Dethier, M; Laekeman, G; Foulon, V

    2013-12-01

    Medication adherence in chronic conditions such as asthma, type 2 diabetes, heart failure, HIV and cancer appears to be a frequent problem. However, the literature on adherence in patients who use inhaled corticosteroids (ICS), oral hypoglycemic agents, drugs for heart failure, antiretrovirals or oral chemotherapy, contains little or no relevant data for Belgium. In the context of a Master thesis in Pharmaceutical care at KU Leuven, a quantitative study was performed to determine the prevalence of adherence to chronic medication in Belgium. This retrospective, cross-sectional study used a database containing refill data of a regional pharmacists' association (KLAV). Out of the 603 pharmacies affiliated with this association, all 50 pharmacies where HIV medication was delivered, were selected. Dispensing data from the selected pharmacies were collected from 01/07/2008 to 31/12/2009 for five pathologies, i.e.; asthma, type 2 diabetes, heart failure, HIV and cancer. Adherence (TT) was calculated with the Medication Refill Adherence (MRA) method. In order to determine whether there were associations between age, gender, drug class and adherence, Chi-square tests were used. Compared with the other patients, cancer patients were the most adherent in taking their drugs (median adherence rate = 88%). In addition, this was the only group in which the median adherence rate was above the set limit of 80%. The patients who were prescribed inhaled corticosteroids were the least adherent (median adherence rate = 38%). More than 50% of patients with asthma/COPD, heart failure and diabetes were classified as "under-users". Furthermore, the results showed a significant association within asthma patients between gender and adherence. In asthma, type 2 diabetes, heart failure and HIV patients there was a significant relationship between age and adherence and drug class and adherence. As the current study has some limitations, the results should be handled with caution. Nevertheless

  1. 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

  2. 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

  3. The old problem of adherence: research on treatment adherence and its relevance for HIV/AIDS.

    PubMed

    Wright, M T

    2000-12-01

    The international published research on patient adherence was selectively reviewed with the goal of determining its relevance for the treatment of HIV/AIDS. Results show that not adhering to treatment regimes is so widespread that no combination of sociodemographic variables is reliably predictive of patients' not following doctors' orders. Achieving 100% adherence for any treatment or patient group does not appear to be realistic. Characteristics of the patient's situation, of the given therapy, and of the disease itself affect adherence. In addition, the patient-doctor relationship and the context of the treatment are important. Often overlooked are the existential dimensions of meaning, self-determination and quality of life which are particularly important for the chronically ill. Treatment needs to be negotiated individually with each patient on the basis of an open therapeutic relationship and with the help of multidimensional interventions. Lessons from the discourse on safer sex can steer adherence research and practice away from a behavioural and reductionist approach toward the context and meaning of treatment. PMID:11177448

  4. [Food-induced anaphylaxis - data from the anaphylaxis registry].

    PubMed

    Worm, Margitta; Grünhagen, Josefine; Dölle, Sabine

    2016-07-01

    Anaphylactic reactions due to food occur in the context of food allergy and, together with venom and drugs, are the most frequent elicitors of severe allergic reactions. In small children the most frequent elicitors of severe allergic reactions according to data from the anaphylaxis registry are hen's egg and milk, whereas in school children peanut and hazelnut are frequent elicitors of allergic reactions. Other frequent elicitors of anaphylactic reactions in childhood are wheat and soy. In adults the most frequent elicitors of severe allergic reactions due to food, based on data from the anaphylaxis registry, are wheat, soy, celery, shellfish and hazelnut. Rare elicitors of food-induced anaphylaxis in German-speaking countries are mustard and cabbage. However, the panel of rare elicitors of food-induced anaphylaxis show regional differences. As of March 2015, 17 cases of fatal anaphylaxis were registered and among these seven were food-induced. Co-factors can either trigger the elicitation of a severe allergic reaction or affect its severity. Among such co-factors are physical activity, the intake of certain drugs, and psychological stress. The data on the role of cofactors is sparse. The management of food-induced anaphylaxis includes acute management according to current guidelines, but also long-term management, which should include educational measures regarding treatment but also information about the food allergen in daily life.

  5. [Food-induced anaphylaxis - data from the anaphylaxis registry].

    PubMed

    Worm, Margitta; Grünhagen, Josefine; Dölle, Sabine

    2016-07-01

    Anaphylactic reactions due to food occur in the context of food allergy and, together with venom and drugs, are the most frequent elicitors of severe allergic reactions. In small children the most frequent elicitors of severe allergic reactions according to data from the anaphylaxis registry are hen's egg and milk, whereas in school children peanut and hazelnut are frequent elicitors of allergic reactions. Other frequent elicitors of anaphylactic reactions in childhood are wheat and soy. In adults the most frequent elicitors of severe allergic reactions due to food, based on data from the anaphylaxis registry, are wheat, soy, celery, shellfish and hazelnut. Rare elicitors of food-induced anaphylaxis in German-speaking countries are mustard and cabbage. However, the panel of rare elicitors of food-induced anaphylaxis show regional differences. As of March 2015, 17 cases of fatal anaphylaxis were registered and among these seven were food-induced. Co-factors can either trigger the elicitation of a severe allergic reaction or affect its severity. Among such co-factors are physical activity, the intake of certain drugs, and psychological stress. The data on the role of cofactors is sparse. The management of food-induced anaphylaxis includes acute management according to current guidelines, but also long-term management, which should include educational measures regarding treatment but also information about the food allergen in daily life. PMID:27255298

  6. [The contribution of cancer registries in environmental health studies].

    PubMed

    Comba, P; Fazzo, L; Fusco, M; Benedetti, M; Pirastu, R; Ricci, P

    2011-01-01

    Cancer incidence is an outcome of interest in studies assessing the health impact of polluted sites, for which an example is represented by SENTIERI Project. Incidence data are characterized by better diagnostic quality and are not influenced by survival factors, furthermore they allow the investigation of high-survival neoplasms (i.e. childhood cancer) and rare malignancies. Furthermore, the study of incidence is more informative than mortality for non-lethal tumours, therefore it represents an advancement in respect to the study of mortality completed in SENTIERI Project. In the last decade in Italy some environmental epidemiology studies used cancer register data, for example the Biancavilla (Sicily) investigation on fluoro-edenite related mesothelioma and the study in an area of Naples Province where hazardous waste was extensively dumped. In this frame, ISS planned some collaborative studies with Siracusa, Mantua and Ferrara cancer Registries, where three major polluted sites are located. Following these pilot studies an ISS-AIRTUM (Italian Association of Cancer Registries) collaborative study has been planned. For a description of SENTIERI, refer to the 2010 supplement of Epidemiology & Prevention, devoted to the Project.

  7. Towards data integration automation for the French rare disease registry

    PubMed Central

    Maaroufi, Meriem; Choquet, Rémy; Landais, Paul; Jaulent, Marie-Christine

    2015-01-01

    Building a medical registry upon an existing infrastructure and rooted practices is not an easy task. It is the case for the BNDMR project, the French rare disease registry, that aims to collect administrative and medical data of rare disease patients seen in different hospitals. To avoid duplicating data entry for health professionals, the project plans to deploy connectors with the existing systems to automatically retrieve data. Given the data heterogeneity and the large number of source systems, the automation of connectors creation is required. In this context, we propose a methodology that optimizes the use of existing alignment approaches in the data integration processes. The generated mappings are formalized in exploitable mapping expressions. Following this methodology, a process has been experimented on specific data types of a source system: Boolean and predefined lists. As a result, effectiveness of the used alignment approach has been enhanced and more good mappings have been detected. Nonetheless, further improvements could be done to deal with the semantic issue and process other data types. PMID:26958224

  8. Towards data integration automation for the French rare disease registry.

    PubMed

    Maaroufi, Meriem; Choquet, Rémy; Landais, Paul; Jaulent, Marie-Christine

    2015-01-01

    Building a medical registry upon an existing infrastructure and rooted practices is not an easy task. It is the case for the BNDMR project, the French rare disease registry, that aims to collect administrative and medical data of rare disease patients seen in different hospitals. To avoid duplicating data entry for health professionals, the project plans to deploy connectors with the existing systems to automatically retrieve data. Given the data heterogeneity and the large number of source systems, the automation of connectors creation is required. In this context, we propose a methodology that optimizes the use of existing alignment approaches in the data integration processes. The generated mappings are formalized in exploitable mapping expressions. Following this methodology, a process has been experimented on specific data types of a source system: Boolean and predefined lists. As a result, effectiveness of the used alignment approach has been enhanced and more good mappings have been detected. Nonetheless, further improvements could be done to deal with the semantic issue and process other data types. PMID:26958224

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

    NASA Technical Reports Server (NTRS)

    1993-01-01

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

  10. The International Quotidian Dialysis Registry: annual report 2005.

    PubMed

    Nesrallah, Gihad; Garg, Amit X; Moist, Louise M; Suri, Rita S; Lindsay, Robert M

    2005-07-01

    The International Quotidian Dialysis Registry was designed to collect data describing treatments, characteristics, and outcomes of patients treated with quotidian hemodialysis (HD) worldwide. In July 2004, North American centers were first invited to enroll patients. By March 1, 2005, a total of 70 nocturnal and 8 short-daily HD patients from three Canadian and two US centers were enrolled. As recruitment continues, projected enrollment for 2005 may exceed 200 patients from North America alone. Preliminary analyses indicate that the current registry cohort is younger (mean age, 49.5 +/- 1.6 years) and carries a lower burden of comorbidity than the overall North American HD population. The low event rate expected in this cohort underlines the need for a large sample size if an appropriately powered survival study is to be undertaken. Increasing recruitment in the United States by including HD centers owned or managed by large dialysis organizations, and beginning overseas collaborations to include Australia, New Zealand, Europe, and South America will be the primary areas of focus for 2005.

  11. 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

  12. The Columbia Registry of Information and Utilization Management Trials.

    PubMed Central

    Balas, E A; Stockham, M G; Mitchell, M A; Austin, S M; West, D A; Ewigman, B G

    1995-01-01

    OBJECTIVE: T systematically locate, register, and abstract information used in comparing effects of various information services (computerized and noncomputerized) and utilization management interventions on the process and outcome of patient care. DESIGN: Manual and electronic database searches located reports that met three main criteria: 1) randomized controlled trial; 2) information or utilization management intervention in the study group with no similar intervention in the control group; and 3) effect of the intervention on the process and/or outcome of patient care had been measured. Published reports were registered in the Columbia Registry. RESULTS: Nearly 600 reports were collected from 24 countries and 189 different publications. Frequently tested interventions included patients or physician education, telephone follow-up, patient or physician reminders, and home care services. Frequently reported effect variables included hospitalization rate, length of stay, immunization rate, and mortality rate. Standardized formal tools were developed for the separation and abstraction of practical information and methodologic details from the collected trial reports. CONCLUSIONS: The registry provides a new source of information for meta-analyses, traditional reviews, and executive summaries of quality improvement of health services. The streamlined knowledge engineering process of quality evaluation and abstraction of critical information can generate helpful information for practitioners and researchers simultaneously. PMID:7496880

  13. 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.

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

    PubMed Central

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

    2014-01-01

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

  15. Developing a CKD Registry in Primary Care: Provider Attitudes and Input

    PubMed Central

    McBride, Dannielle; Dohan, Daniel; Handley, Margaret A.; Powe, Neil R.; Tuot, Delphine S.

    2013-01-01

    Background. Chronic disease registries have been successful at promoting delivery of guideline-concordant primary care for diabetes and hypertension but not for chronic kidney disease (CKD). To understand whether a registry could be designed to improve CKD management in primary care, we explored primary care provider (PCP) attitudes about the benefits (or lack thereof) of a CKD registry compared to other chronic diseases and the key facilitators of successfully implementing a CKD registry in safety-net primary care. Study Design: Semistructured interview study. Setting & Participants. We conducted and recorded semi-structured, one-hour interviews with medical directors and quality improvement champions from safety-net adult primary care clinics in San Francisco. Analytic Approach. Recordings were transcribed and analyzed using a grounded theory approach until thematic saturation was achieved. Results. Twenty primary care providers were interviewed. Four themes relevant to the development of a successful CKD registry for safety-net primary care were identified: (1) provider beliefs that a CKD registry could aid in the delivery of team-based, high-quality CKD care; (2) clinic workflow re-design and staffing are key facilitators to successful implementation of a CKD registry; (3) unique complexities of CKD, such as varying etiologies, may limit the use of a CKD registry by non-physicians; and (4) a CKD registry is aligned with current primary care priorities and health care delivery strategies. Limitations. Small sample size and reliance on clinician leaders within one health care delivery system. Conclusions. A CKD registry directed at the entire health care team, with the functionality to track, standardize and enhance CKD care through decision support, has potential to improve the management of CKD in safety-net primary care settings. These data directly informed the development of a CKD registry in these settings in San Francisco. PMID:24295612

  16. Adherence to diabetes medication in individuals with schizophrenia.

    PubMed

    Gorczynski, Paul; Patel, Hiren; Ganguli, Rohan

    2014-02-01

    Introduction: Despite the importance of medication adherence for the effective treatment of type II diabetes mellitus (T2DM), little research has examined adherence with diabetes medication treatment in schizophrenia. The purpose of this systematic review was to 1) evaluate rates of adherence and determinants of adherence with medication for T2DM in individuals with schizophrenia, and, where possible, 2) examine the relationship between medication adherence and glycemic control. Methods: Studies were included if they presented information on dosing regimens and adherence or compliance rates for T2DM and included samples where at least 50% of the participants were individuals with schizophrenia. Results: Six studies were included in this review that predominantly examined men over the age of 50 years. Studies confirmed that many individuals with schizophrenia were not adhering to their diabetes medication as adherence rates ranged from 51-85%. Two studies that compared medication adherence in individuals with and without schizophrenia found those with the mental illness had higher rates of adherence. One study reported that blood glucose control levels were not statistically different between those who did and did not adhere to their medication, indicating more research is necessary in this area. Factors that improved adherence included disease and medical service and medication related factors. Conclusions: Interventions to increase diabetes medication adherence in schizophrenia need to address disease and medical service and medication related factors. Further research needs to examine diabetes medication adherence in women, younger individuals, and those recently diagnosed with diabetes as these individuals have been underrepresented in the literature.

  17. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-05-25

    ... HUMAN SERVICES Food and Drug Administration Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established by the Food and Drug Administration Amendments Act of 2007... information to the industry in complying with the Reportable Food Registry requirements prescribed by the...

  18. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-11-19

    ... required to organize and update the information contained in AOR to be able to notify Vietnam era veterans who served in the Republic of Vietnam of any increased health risks resulting from exposure to dioxin... VA that is similar to the Persian Gulf War Veterans Health Registry. Registry examination is...

  19. 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... the Federal Register (75 FR 72878) titled: ``Pipeline Safety: Updates to Pipeline and...

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

    PubMed Central

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

    2016-01-01

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

  1. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... OF CONGRESS TELEMARKETING SALES RULE 16 CFR PART 310 § 310.8 Fee for access to the National Do Not Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... required to access, the National Do Not Call Registry under this Rule, 47 CFR 64.1200, or any other...

  2. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... OF CONGRESS TELEMARKETING SALES RULE 16 CFR PART 310 § 310.8 Fee for access to the National Do Not Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... required to access, the National Do Not Call Registry under this Rule, 47 CFR 64.1200, or any other...

  3. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... OF CONGRESS TELEMARKETING SALES RULE 16 CFR PART 310 § 310.8 Fee for access to the National Do Not Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... required to access, the National Do Not Call Registry under this Rule, 47 CFR 64.1200, or any other...

  4. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... OF CONGRESS TELEMARKETING SALES RULE 16 CFR PART 310 § 310.8 Fee for access to the National Do Not Call Registry. (a) It is a violation of this Rule for any seller to initiate, or cause any telemarketer... required to access, the National Do Not Call Registry under this Rule, 47 CFR 64.1200, or any other...

  5. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 36 Parks, Forests, and Public Property 3 2012-07-01 2012-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  6. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 36 Parks, Forests, and Public Property 3 2013-07-01 2012-07-01 true Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  7. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 36 Parks, Forests, and Public Property 3 2014-07-01 2014-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  8. The Trace Center International Hardware/Software Registry: Programs for Handicapped Students.

    ERIC Educational Resources Information Center

    Brady, Mary

    1982-01-01

    The Trace Center (University of Wisconsin) has assembled a registry of hardware/software programs and adaptations for the handicapped user. The registry contains information on augmentative devices for motoric, sensory, or cognitive skills; special inputs that provide access to standard software; and other programs with speech output. (CL)

  9. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 36 Parks, Forests, and Public Property 3 2011-07-01 2011-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  10. The North Carolina Online Sex Offender Registry: Awareness and Utilization by Childcare Providers

    ERIC Educational Resources Information Center

    White, Jennifer L.; Malesky, L. Alvin, Jr.

    2009-01-01

    This study examined childcare providers' usage of the North Carolina Sex Offender and Public Protection Registry. One hundred twenty three childcare providers in 76 counties in North Carolina were surveyed via telephone interview about their utilization of the registry Web site. Responses revealed that most providers knew about the registry…

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

  12. Limitations of using a cancer registry to identify incident primary intracranial tumours

    PubMed Central

    Counsell, C.; Collie, D.; Grant, R.

    1997-01-01

    The completeness and accuracy of registration of primary intracranial tumours in the Scottish Cancer Registry was compared with a detailed incidence study performed over a two year period (1989-90). Of 228 patients with any primary intracranial tumour in the incidence study, 124 (54%) were identified as intracranial tumours in the cancer registry. The registry excluded benign tumours (although this was not consistent) and so the sensitivity of the registry varied with tumour type (84% for neuroepithelial tumours, 22% meningeal, 29% sellar, 0% cranial nerve). Of the 31 malignant tumours not found in the registry on our initial search, nine were found to have been included between 1989-90 but using different International Classification of Diseases-9th revision (ICD-9) codes or postcodes, and seven were found registered after 1990.Eleven per cent of cases (18/170) identified in the cancer registry were excluded from the incidence study: 11 had evidence of an intracranial tumour before 1989 whereas four definitely did not have an intracranial tumour. The cancer registry therefore significantly underestimated the incidence of all primary intracranial tumours, and of malignant intracranial tumours. Incidence studies must use additional methods to identify all primary tumours. Cancer registries should consider registering all primary intracranial tumours and may improve case ascertainment by screening neuroradiology data.

 PMID:9221974

  13. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-05

    ... AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment... members of the Armed Forces to toxic airborne chemicals and fumes caused by open burn pits. DATES: Written...: cynthia.harvey-pryor@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry...

  14. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  15. 75 FR 68604 - National Saltwater Angler Registry Program Designation of Exempted States

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-11-08

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF COMMERCE 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,...

  16. Classification of Topographical Pattern of Spasticity in Cerebral Palsy: A Registry Perspective

    ERIC Educational Resources Information Center

    Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…

  17. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-23

    ... email subscription service and advises current subscribers on how to continue receiving emails on topics... Protection and Quarantine (PPQ) stakeholder registry is an email subscription service that allows individuals... Stakeholder Registry in order to continue receiving emails on PPQ-related topics. Subscribers will be able...

  18. 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. PMID:26553885

  19. Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry--The EXCITING-ILD Registry.

    PubMed

    Kreuter, Michael; Herth, Felix J F; Wacker, Margarethe; Leidl, Reiner; Hellmann, Andreas; Pfeifer, Michael; Behr, Jürgen; Witt, Sabine; Kauschka, Dagmar; Mall, Marcus; Günther, Andreas; Markart, Philipp

    2015-01-01

    Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address these issues in Germany, a new prospective ILD registry, "Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases" (EXCITING-ILD), is being conducted by the German Centre for Lung Research in association with ambulatory, inpatient, scientific pulmonology organisations and patient support groups. This multicentre, noninterventional, prospective, and observational ILD registry aims to collect comprehensive and validated data from all healthcare institutions on the incidence, prevalence, characteristics, management, and outcomes regarding all ILD presentations in the real-world setting. Specifically, this registry will collect demographic data, disease-related data such as ILD subtype, treatments, diagnostic procedures (e.g., HRCT, surgical lung biopsy), risk factors (e.g., familial ILD), significant comorbidities, ILD managements, and disease outcomes as well as healthcare resource consumption. The EXCITING-ILD registry will include in-patient and out-patient ILD healthcare facilities in more than 100 sites. In summary, this registry will document comprehensive and current epidemiological data as well as important health economic data for ILDs in Germany. PMID:26640781

  20. 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

  1. 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

  2. Determinants of methotrexate adherence in rheumatoid arthritis patients.

    PubMed

    De Cuyper, Ellen; De Gucht, Veronique; Maes, Stan; Van Camp, Yoleen; De Clerck, Luc S

    2016-05-01

    In rheumatoid arthritis (RA) patients, weekly intake of methotrexate (MTX) is the basic drug treatment. This observational study aims to investigate how many RA patients are adherent in terms of MTX intake and to identify determinants of non-adherence. Intake of MTX (orally or via injection) was recorded in 129 RA patients with an electronic monitoring system (MEMS(®)) during 16 weeks. In addition, two adherence questionnaires, the Medication Adherence Report Scale (MARS-5) and the Compliance-Questionnaire-Rheumatology (CQR) as well as a visual analogue scale (VAS) measuring MTX adherence, were administered to these patients. As possible determinants of adherence, data on demographics, disease and treatment characteristics, depression, illness cognitions, motivation, and social support were collected. Of all participants, 58 % were fully adherent and 75 % skipped at most one dose during 16 weeks. A better mental health status and suffering from comorbidities had a positive effect on adherence, while living alone had a negative effect. These three predictors explained 30 % of the variance in MTX adherence. Of the three self-report medication adherence measures, the VAS correlated the highest with the results of the electronic monitoring system (r = 0.552, p = 0.01). A relatively high adherence rate was observed in RA patients treated with MTX. The determinants identified by this study could be used to screen patients at risk for non-adherence. A simple VAS scale seems to be an acceptable way for a preliminary screening of MTX adherence. PMID:26781783

  3. Medication adherence among transgender women living with HIV.

    PubMed

    Baguso, Glenda N; Gay, Caryl L; Lee, Kathryn A

    2016-08-01

    Medication adherence is linked to health outcomes among adults with HIV infection. Transgender women living with HIV (TWLWH) in the US report suboptimal adherence to medications and are found to have difficulty integrating HIV medication into their daily routine, but few studies explore the factors associated with medication adherence among transgender women. Thus, the purpose of this paper is to examine demographic and clinical factors related to self-reported medication adherence among transgender women. This secondary analysis is based on data collected from the Symptom and Genetic Study that included a convenience sample of 22 self-identified transgender women, 201 non-transgender men, and 72 non-transgender women recruited in northern California. Self-reported medication adherence was assessed using the AIDS Clinical Trials Group Adherence Questionnaire. Gender differences in demographic and clinical variables were assessed, as were differences between transgender women reporting high and low adherence. Transgender women had lower adherence to medications compared to non-transgender males and non-transgender females (p = .028) and were less likely to achieve viral suppression (p = .039). Within the transgender group, Black/African-Americans reported better adherence than participants who were Whites/Caucasian or other races (p = .009). Adherence among transgender women was unrelated to medication count and estrogen therapy, but consistent with other reports on the HIV population as a whole; transgender women with high adherence were more likely to achieve viral suppression compared to the transgender women with low adherence. Despite the high incidence of HIV infection in the transgender population, few studies focus on TWLWH, either in regard to their adherence to antiretroviral therapies or to their healthcare in general. To address ongoing health disparities, more studies are needed focusing on the transgender population's continuum of care in

  4. Patient adherence to medical treatment: a review of reviews

    PubMed Central

    van Dulmen, Sandra; Sluijs, Emmy; van Dijk, Liset; de Ridder, Denise; Heerdink, Rob; Bensing, Jozien

    2007-01-01

    Background Patients' non-adherence to medical treatment remains a persistent problem. Many interventions to improve patient adherence are unsuccessful and sound theoretical foundations are lacking. Innovations in theory and practice are badly needed. A new and promising way could be to review the existing reviews of adherence to interventions and identify the underlying theories for effective interventions. That is the aim of our study. Methods The study is a review of 38 systematic reviews of the effectiveness of adherence interventions published between 1990 and 2005. Electronic literature searches were conducted in Medline, Psychinfo, Embase and the Cochrane Library. Explicit inclusion and exclusion criteria were applied. The scope of the study is patient adherence to medical treatment in the cure and care sector. Results Significant differences in the effectiveness of adherence interventions were found in 23 of the 38 systematic reviews. Effective interventions were found in each of four theoretical approaches to adherence interventions: technical, behavioural, educational and multi-faceted or complex interventions. Technical solutions, such as a simplification of the regimen, were often found to be effective, although that does not count for every therapeutic regimen. Overall, our results show that, firstly, there are effective adherence interventions without an explicit theoretical explanation of the operating mechanisms, for example technical solutions. Secondly, there are effective adherence interventions, which clearly stem from the behavioural theories, for example incentives and reminders. Thirdly, there are other theoretical models that seem plausible for explaining non-adherence, but not very effective in improving adherence behaviour. Fourthly, effective components within promising theories could not be identified because of the complexity of many adherence interventions and the lack of studies that explicitly compare theoretical components

  5. The role of the hospital registry in achieving outcome benchmarks in cancer care.

    PubMed

    Greene, Frederick L; Gilkerson, Sharon; Tedder, Paige; Smith, Kathy

    2009-06-15

    The hospital registry is a valuable tool for evaluating quality benchmarks in cancer care. As payment for performance standards are adopted, the registry will assume a more dynamic and economically important role in the hospital setting. At Carolinas Medical Center, the registry has been a key instrument in the comparison of state and national benchmarks and for program improvement in meeting standards in the care of breast and colon cancer. One of the significant successes of the American College of Surgeons Commission on Cancer (CoC) Hospital Approvals Program is the support of hospital registries, especially in small and midsized community hospitals throughout the United States. To become a member of the Hospital Approvals Program, a registry must be staffed appropriately and include analytic data for patients who have their primary diagnosis or treatment at the facility 1. The current challenge for most hospitals is to prove that the registry has specific worth when many facets of care are not compensated. Unfortunately a small number of hospitals have disbanded their registries because of the short-sighted decision that the registry and its personnel are a drain on the hospital system and do not generate revenue. In the present era of meeting benchmarks for care as a prelude to being paid by third party and governmental agencies 2,3, a primary argument is that the registry can be revenue-enhancing by quantifying specific outcomes in cancer care. Without having appropriate registry and abstract capability, the hospital leadership cannot measure the specific outcome benchmarks required in the era of "pay for performance" or "pay for participation".

  6. Creation of a Hyponatremia Registry Supported by an Industry-Derived Quality Control Methodology

    PubMed Central

    D., Giunta; N., Fuentes; V., Pazo; M. L., Posadas-Martínez; H., Michellangelo; G., Waisman; F., González Bernaldo De Quirós

    2010-01-01

    Background A clinical registry encompasses a selective set of rigorously collected and stored clinical data focused on a specific condition. Hyponatremia has multiple, complex underlying causes and is one of the most frequent laboratory abnormalities. No systematic registries of hyponatremic patients have been reported in the medical literature. The purpose of this project was to create a registry for hyponatremia in order to obtain epidemiological data that will help to better understand this condition. Objective This paper describes the creation of a registry for hyponatremia within a single institution that employs industry-based approaches for quality management to optimize data accuracy and completeness. Methods A prospective registry of incident hyponatremia cases was created for this study. A formalized statistically based quality control methodology was developed and implemented to analyze and monitor all the process indicators that were developed to ensure data quality. Results Between December 2006 and April 2009, 2443 episodes of hyponatremia were included. Six process indicators that reflect the integrity of the system were evaluated monthly, looking for variation that would suggest systematic problems. The graphical representation of the process measures through control charts allowed us to identify and subsequently address problems with maintaining the registry. Conclusion In this project we have created a novel hyponatremia registry. To ensure the quality of the data in this registry we have implemented a quality control methodology based on industrial principles that allows us to monitor the performance of the registry over time through process indicators in order to detect systematic problems. We postulate that this approach could be reproduced for other registries. PMID:23616856

  7. Comorbidities associated with psoriasis - data from the malaysian psoriasis registry.

    PubMed

    Mazlin, M B; Chang, C C; Baba, R

    2012-10-01

    All around the world, there is growing evidence of the association between psoriasis and comorbidities which increase the risk of cardiovascular disease. This study aims to determine the prevalence of various comorbidities among adult psoriasis patients in Malaysia. A cross-sectional study was conducted among patients in the Malaysian Psoriasis Registry from January 2007 to December 2008. A total of 2,267 adult patients with psoriasis from 13 dermatology centers were included. Prevalence of various comorbidities were: hypertension 25.9%, diabetes mellitus 17.7 %, dyslipidaemia 17.8%, overweight 33.2%, obesity 20.7%, ischaemic heart disease 5.8% and cerebrovascular disease 1.4%. These comorbidities were more prevalent in patients with psoriasis of late-onset and longer duration. Active screening of these comorbidities in all adult psoriasis patients is recommended.

  8. Automated microinjection system for adherent cells

    NASA Astrophysics Data System (ADS)

    Youoku, Sachihiro; Suto, Yoshinori; Ando, Moritoshi; Ito, Akio

    2007-07-01

    We have developed an automated microinjection system that can handle more than 500 cells an hour. Microinjection injects foreign agents directly into cells using a micro-capillary. It can randomly introduce agents such as DNA, proteins and drugs into various types of cells. However, conventional methods require a skilled operator and suffer from low throughput. The new automated microinjection techniques we have developed consist of a Petri dish height measuring method and a capillary apex position measuring method. The dish surface height is measured by analyzing the images of cells that adhere to the dish surface. The contrast between the cell images is minimized when the focus plane of an object lens coincides with the dish surface. We have developed an optimized focus searching method with a height accuracy of +/-0.2 um. The capillary apex position detection method consists of three steps: rough, middle, and precise. These steps are employed sequentially to cover capillary displacements of up to +/-2 mm, and to ultimately accomplish an alignment accuracy of less than one micron. Experimental results using this system we developed show that it can introduce fluorescent material (Alexa488) into adherent cells, HEK293, with a success rate of 88.5%.

  9. Aneurysm Study of Pipeline in an Observational Registry (ASPIRe)

    PubMed Central

    Kallmes, David F.; Brinjikji, Waleed; Boccardi, Edoardo; Ciceri, Elisa; Diaz, Orlando; Tawk, Rabih; Woo, Henry; Jabbour, Pascal; Albuquerque, Felipe; Chapot, Rene; Bonafe, Alain; Dashti, Shervin R.; Almandoz, Josser E. Delgado; Given, Curtis; Kelly, Michael E.; Cross, DeWitte T.; Duckwiler, Gary; Razack, Nasser; Powers, Ciaran J.; Fischer, Sebastian; Lopes, Demetrius; Harrigan, Mark R.; Huddle, Daniel; Turner, Raymond; Zaidat, Osama O.; Defreyne, Luc; Pereira, Vitor Mendes; Cekirge, Saruhan; Fiorella, David; Hanel, Ricardo A.; Lylyk, Pedro; McDougall, Cameron; Siddiqui, Adnan; Szikora, Istvan; Levy, Elad

    2016-01-01

    Background and Objective Few prospective studies exist evaluating the safety and efficacy of the Pipeline Embolization Device (PED) in the treatment of intracranial aneurysms. The Aneurysm Study of Pipeline In an observational Registry (ASPIRe) study prospectively analyzed rates of complete aneurysm occlusion and neurologic adverse events following PED treatment of intracranial aneurysms. Materials and Methods We performed a multicenter study prospectively evaluating patients with unruptured intracranial aneurysms treated with PED. Primary outcomes included (1) spontaneous rupture of the Pipeline-treated aneurysm; (2) spontaneous nonaneurysmal intracranial hemorrhage (ICH); (3) acute ischemic stroke; (4) parent artery stenosis, and (5) permanent cranial neuropathy. Secondary endpoints were (1) treatment success and (2) morbidity and mortality at the 6-month follow-up. Vascular imaging was evaluated at an independent core laboratory. Results One hundred and ninety-one patients with 207 treated aneurysms were included in this registry. The mean aneurysm size was 14.5 ± 6.9 mm, and the median imaging follow-up was 7.8 months. Twenty-four aneurysms (11.6%) were small, 162 (78.3%) were large and 21 (10.1%) were giant. The median clinical follow-up time was 6.2 months. The neurological morbidity rate was 6.8% (13/191), and the neurological mortality rate was 1.6% (3/191). The combined neurological morbidity/mortality rate was 6.8% (13/191). The most common adverse events were ischemic stroke (4.7%, 9/191) and spontaneous ICH (3.7%, 7/191). The complete occlusion rate at the last follow-up was 74.8% (77/103). Conclusions Our prospective postmarket study confirms that PED treatment of aneurysms in a heterogeneous patient population is safe with low rates of neurological morbidity and mortality. Patients with angiographic follow-up had complete occlusion rates of 75% at 8 months.

  10. Standardized Cardiovascular Data for Clinical Research, Registries, and Patient Care

    PubMed Central

    Anderson, H. Vernon; Weintraub, William S.; Radford, Martha J.; Kremers, Mark S.; Roe, Matthew T.; Shaw, Richard E.; Pinchotti, Dana M.; Tcheng, James E.

    2013-01-01

    Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nevertheless these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the two major technical standards organizations in healthcare, the Clinical Data Interchange Standards Consortium and Health Level 7 International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care. PMID

  11. Aneurysm Study of Pipeline in an Observational Registry (ASPIRe)

    PubMed Central

    Kallmes, David F.; Brinjikji, Waleed; Boccardi, Edoardo; Ciceri, Elisa; Diaz, Orlando; Tawk, Rabih; Woo, Henry; Jabbour, Pascal; Albuquerque, Felipe; Chapot, Rene; Bonafe, Alain; Dashti, Shervin R.; Almandoz, Josser E. Delgado; Given, Curtis; Kelly, Michael E.; Cross, DeWitte T.; Duckwiler, Gary; Razack, Nasser; Powers, Ciaran J.; Fischer, Sebastian; Lopes, Demetrius; Harrigan, Mark R.; Huddle, Daniel; Turner, Raymond; Zaidat, Osama O.; Defreyne, Luc; Pereira, Vitor Mendes; Cekirge, Saruhan; Fiorella, David; Hanel, Ricardo A.; Lylyk, Pedro; McDougall, Cameron; Siddiqui, Adnan; Szikora, Istvan; Levy, Elad

    2016-01-01

    Background and Objective Few prospective studies exist evaluating the safety and efficacy of the Pipeline Embolization Device (PED) in the treatment of intracranial aneurysms. The Aneurysm Study of Pipeline In an observational Registry (ASPIRe) study prospectively analyzed rates of complete aneurysm occlusion and neurologic adverse events following PED treatment of intracranial aneurysms. Materials and Methods We performed a multicenter study prospectively evaluating patients with unruptured intracranial aneurysms treated with PED. Primary outcomes included (1) spontaneous rupture of the Pipeline-treated aneurysm; (2) spontaneous nonaneurysmal intracranial hemorrhage (ICH); (3) acute ischemic stroke; (4) parent artery stenosis, and (5) permanent cranial neuropathy. Secondary endpoints were (1) treatment success and (2) morbidity and mortality at the 6-month follow-up. Vascular imaging was evaluated at an independent core laboratory. Results One hundred and ninety-one patients with 207 treated aneurysms were included in this registry. The mean aneurysm size was 14.5 ± 6.9 mm, and the median imaging follow-up was 7.8 months. Twenty-four aneurysms (11.6%) were small, 162 (78.3%) were large and 21 (10.1%) were giant. The median clinical follow-up time was 6.2 months. The neurological morbidity rate was 6.8% (13/191), and the neurological mortality rate was 1.6% (3/191). The combined neurological morbidity/mortality rate was 6.8% (13/191). The most common adverse events were ischemic stroke (4.7%, 9/191) and spontaneous ICH (3.7%, 7/191). The complete occlusion rate at the last follow-up was 74.8% (77/103). Conclusions Our prospective postmarket study confirms that PED treatment of aneurysms in a heterogeneous patient population is safe with low rates of neurological morbidity and mortality. Patients with angiographic follow-up had complete occlusion rates of 75% at 8 months. PMID:27610126

  12. Side effects, adherence self-efficacy, and adherence to antiretroviral treatment: a mediation analysis in a Chinese sample.

    PubMed

    Zhang, Liying; Li, Xiaoming; Lin, Zhenping; Jacques-Tiura, Angela J; Xu, Jinping; Zhou, Yuejiao; Qiao, Shan; Shen, Zhiyong; Stanton, Bonita

    2016-07-01

    Antiretroviral therapy (ART) is a lifelong treatment. To date, ART adherence is suboptimal for most patients in resource-poor settings. Previous research indicates that medication side effects are perceived to be a significant barrier of high ART adherence. Data regarding the role of adherence self-efficacy in mediating the relationship between side effects from ART and adherence to ART are limited; thus, this study examines this potential mediational role of self-efficacy. A cross-sectional survey of 2987 people living with HIV aged ≥18 years was conducted in 2012-2013 in Guangxi Autonomous Region (Guangxi) which has one of the fastest-growing HIV rates in China. Of the total sample, 2146 (72.1%) participants had initiated ART. Participants reported the number of days of completing the daily dose of ART in the past month; adherence was defined as completing the daily dose at least 28 days in the last month (≥90%). Side effects were significantly negatively related to adherence to ART. Mediation analyses indicated that adherence self-efficacy significantly mediated the side effects-adherence relationship. Future interventions to increase adherence self-efficacy and effective coping with side effects among HIV patients are needed in order to improve their ART adherence.

  13. Clinical factors associated with statins prescription in acute ischemic stroke patients: findings from the Lombardia Stroke Registry

    PubMed Central

    2014-01-01

    Background Statins, due to their well-established pleiotropic effects, have noteworthy benefits in stroke prevention. Despite this, a significant proportion of high-risk patients still do not receive the recommended therapeutic regimens, and many others discontinue treatment after being started on them. The causes of non-adherence to current guidelines are multifactorial, and depend on both physicians and patients. The aim of this study is to identify the factors influencing statin prescription at Stroke Unit (SU) discharge. Methods This study included 12,750 patients enrolled on the web-based Lombardia Stroke Registry (LRS) from July 2009 to April 2012 and discharged alive, with a diagnosis of ischemic stroke or transient ischemic attack (TIA) and without contra-indication to statin therapy. By logistic regression analysis and classification trees, we evaluated the impact of demographic data, risk factors, tPA treatment, in-hospital procedures and complications on statin prescription rate at discharge. Results We observed a slight increase in statins prescription during the study period (from 39.1 to 43.9%). Lower age, lower stroke severity and prestroke disability, the presence of atherothrombotic/lacunar risk factors, a diagnosis of non-cardioembolic stroke, tPA treatment, the absence of in-hospital complications, with the sole exception of hypertensive fits and hyperglycemia, were the patient-related predictors of adherence to guidelines by physicians. Overall, dyslipidemia appears as the leading factor, while TOAST classification does not reach statistical significance. Conclusions In our region, Lombardia, adherence to guidelines in statin prescription at Stroke Unit discharge is very different from international goals. The presence of dyslipidemia remains the main factor influencing statin prescription, while the presence of well-defined atherosclerotic etiopathogenesis of stroke does not enhance statin prescription. Some uncertainties about the risk

  14. Staffing and Training Requirements for Tumor Registry Centers in the State of Louisiana. Technical Report 69-101.

    ERIC Educational Resources Information Center

    Fink, C. Dennis

    An exploratory study was conducted to obtain information regarding staff requirements in small tumor registry centers, involving a brief analysis of existing tumor registry centers and exploration of training and organizational factors that might be associated with establishing new centers. Activities performed by tumor registry personnel were…

  15. Challenges in measuring medication adherence: experiences from a controlled trial.

    PubMed

    Stewart, Kay; Mc Namara, Kevin P; George, Johnson

    2014-02-01

    Measurement of adherence is complex and many methods, both direct and indirect are used; there is no universal gold standard. In this article, we share our experiences in a randomised controlled study, the Hypertension Adherence Program in Pharmacy trial, evaluating a community pharmacy-based intervention for improving adherence to antihypertensive medication. Several objective and subjective measures of adherence (Morisky score, TABS score, MedsIndex, Medicines Possession Ratio) were used, but produced varying results, limiting confidence in the conclusions that could be drawn. Despite using a specifically designed data mining software program to identify potentially nonadherent patients from dispensing records, many participants were found to be adherent by the self reported Morisky scale. A lesson to be learned when targeting people for interventions to improve adherence is that information from dispensing records should be supplemented by other methods in order to identify patients most in need of assistance.

  16. [e-Health interventions and improvement in treatment adherence].

    PubMed

    Sieben, Angelien; Bredie, S J H Bas; van Laarhoven, C J H M Kees; Schoonhoven, Lisette; Burger, David M; van Onzenoort, Hein A W

    2014-01-01

    Poor adherence to medication is one of the most important determinants in the treatment of patients with chronic disorders. e-Health-based interventions may be able to improve treatment adherence. This article gives an overview of the available e-Health interventions and the extent to which they can improve adherence. We searched in the PubMed, Cinahl, PsycInfo, and Embase databases for e-Health interventions that aimed at improving adherence to treatment. Of the 16 included studies, 15 used a website and one used an app. Ten studies showed a significant improvement in treatment adherence by using the intervention. e-Health interventions were generally complex. Simple interventions were the most successful in improving treatment adherence.

  17. [Strategies for measuring medication adherence in patients with schizophrenia].

    PubMed

    Wang, Yunfang; Huang, Zhiping; Xu, Dong; Gong, Wenjie; Tang, Yuan; Xiao, Shuiyuan

    2016-02-01

    Long-term therapy should be administrated for patients with schizophrenia and the medication adherence is very important for the prognosis and outcome in these patients. In this study, we screened the literatures from various databases in accordance with our search criteria. A total of 11 literatures with the results of reliability and validity regarding the measurement of schizophrenia medication adherence were enrolled in our analysis. Based on the measurements, they were classified into subjective methods and objective ones. The objective methods include blood plasma and urine concentrations, pharmacy records, pill counts and Medication Event Monitoring System. The subjective methods include Drug Attitude Inventory, Rating of Medication Influences Scale, Brief Evaluation of Medication Influences and Beliefs, the Brief Adherence Rating Scale, Medication Adherence Rating Scale, and Morisky scales. In general, single method for measuring medication adherence in patients with schizophrenia is limited. We recommend researchers to use 2 or more methods when measuring the medication adherence in patients with schizophrenia.

  18. Towards tailored and targeted adherence assessment to optimise asthma management.

    PubMed

    van Boven, Job F M; Trappenburg, Jaap C A; van der Molen, Thys; Chavannes, Niels H

    2015-01-01

    In this paper, we aim to emphasise the need for a more comprehensive and tailored approach to manage the broad nature of non-adherence, to personalise current asthma management. Although currently several methods are available to measure the extent of asthma patients' adherence, the vast majority do not incorporate confirmation of the actual inhalation, dose and inhalation technique. Moreover, most current measures lack detailed information on the individual consequences of non-adherence and on when and how to take action if non-adherence is identified. Notably, one has to realise there are several forms of non-adherence (erratic non-adherence, intelligent non-adherence and unwitting non-adherence), each requiring a different approach. To improve asthma management, more accurate methods are needed that integrate measures of non-adherence, asthma disease control and patient preferences. Integrating information from the latest inhaler devices and patient-reported outcomes using mobile monitoring- and feedback systems ('mHealth') is considered a promising strategy, but requires careful implementation. Key issues to be considered before large-scale implementation include patient preferences, large heterogeneity in patient and disease characteristics, economic consequences, and long-term persistence with new digital technologies.

  19. HIV Treatment Adherence, Drug Resistance, Virologic Failure: Evolving Concepts

    PubMed Central

    Nachega, Jean B.; Marconi, Vincent C.; van Zyl, Gert U.; Gardner, Edward M.; Preiser, Wolfgang; Hong, Steven Y.; Mills, Edward J.; Gross, Robert

    2016-01-01

    Poor adherence to combined antiretroviral therapy (cART) has been shown to be a major determinant of virologic failure, emergence of drug resistant virus, disease progression, hospitalizations, mortality, and health care costs. While high adherence levels can be achieved in both resource-rich and resource-limited settings following initiation of cART, long-term adherence remains a challenge regardless of available resources. Barriers to optimal adherence may originate from individual (biological, socio-cultural, behavioral), pharmacological, and societal factors. Although patients and providers should continuously strive for maximum adherence to cART, there is accumulating evidence that each class of antiretroviral therapy has specific adherence-drug resistance relationship characteristics allowing certain regimens more flexibility than others. There is not a universally accepted measure for cART adherence, since each method has distinct advantages and disadvantages including cost, complexity, accuracy, precision, intrusiveness and bias. Development of a real-time cART adherence monitoring tool will enable the development of novel, pre-emptive adherence-improving strategies. The application of these strategies may ultimately prove to be the most cost-effective method to reduce morbidity and mortality for the individual and decrease the likelihood of HIV transmission and emergence of resistance in the community. PMID:21406048

  20. Towards tailored and targeted adherence assessment to optimise asthma management

    PubMed Central

    van Boven, Job FM; Trappenburg, Jaap CA; van der Molen, Thys; Chavannes, Niels H

    2015-01-01

    In this paper, we aim to emphasise the need for a more comprehensive and tailored approach to manage the broad nature of non-adherence, to personalise current asthma management. Although currently several methods are available to measure the extent of asthma patients’ adherence, the vast majority do not incorporate confirmation of the actual inhalation, dose and inhalation technique. Moreover, most current measures lack detailed information on the individual consequences of non-adherence and on when and how to take action if non-adherence is identified. Notably, one has to realise there are several forms of non-adherence (erratic non-adherence, intelligent non-adherence and unwitting non-adherence), each requiring a different approach. To improve asthma management, more accurate methods are needed that integrate measures of non-adherence, asthma disease control and patient preferences. Integrating information from the latest inhaler devices and patient-reported outcomes using mobile monitoring- and feedback systems (‘mHealth’) is considered a promising strategy, but requires careful implementation. Key issues to be considered before large-scale implementation include patient preferences, large heterogeneity in patient and disease characteristics, economic consequences, and long-term persistence with new digital technologies. PMID:26181850

  1. Heart failure patient adherence: epidemiology, cause, and treatment.

    PubMed

    Corotto, Paul S; McCarey, Melissa M; Adams, Suzanne; Khazanie, Prateeti; Whellan, David J

    2013-01-01

    Poor adherence to therapeutic regimens is a significant impediment to improving clinical outcomes in the HF population. Typical rates of adherence to prescribed medications, low-sodium diets, and aerobic exercise programs remain lower than that needed to decrease morbidity and mortality associated with HF. Factors contributing to poor adherence include multiple comorbidities, clinical depression, and decreased cognitive functioning. HF education and programs to enhance self-management skills have improved patient quality of life but have yet to decrease mortality or rehospitalization rates significantly. Telemonitoring to improve adherence behaviors and self-management interventions within broader HF management programs have demonstrated significant clinical improvements in this population.

  2. [The role of drug registries in the post-marketing surveillance].

    PubMed

    Traversa, Giuseppe; Sagliocca, Luciano; Magrini, Nicola; Venegoni, Mauro

    2013-06-01

    The aim of this article is to provide an introduction to issue of Recenti Progressi in Medicina, devoted to the role of drug registries in the post-marketing surveillance. We first motivate the need to implement registries as a tool in promoting the appropriateness of drug use and acquiring additional information on the risk-benefit profile of drugs. Then, the different role that can be played by registries in comparison with prescription monitoring systems and observational studies is clarified. The presentation of some of the most relevant registries established in Italy since the end of the '90s, with the analysis of their strengths and weaknesses, helps to understand some of the crucial issues that should be taken into account before a new registry is adopted. Specifically, we deal with the relationship between objectives - of appropriateness, effectiveness and safety - and methods; the overlapping between drug-based registries and disease-based ones; the duration and extension of data collection, which may be either exhaustive or based on a sampling frame; the importance of ensuring the quality of the data and to minimize the number of subjects who are lost to follow-up; the importance of infrastructures, and of ad hoc funding, for the functioning of a registry; the independence in data analysis and publication of findings.

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

    PubMed

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

    2014-01-01

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

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

    PubMed Central

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

    2015-01-01

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

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

    PubMed

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

    2015-01-01

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

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

    PubMed

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

    2015-01-01

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

  7. Compliance of clinical trial registries with the World Health Organization minimum data set: a survey

    PubMed Central

    Moja, Lorenzo P; Moschetti, Ivan; Nurbhai, Munira; Compagnoni, Anna; Liberati, Alessandro; Grimshaw, Jeremy M; Chan, An-Wen; Dickersin, Kay; Krleza-Jeric, Karmela; Moher, David; Sim, Ida; Volmink, Jimmy

    2009-01-01

    Background Since September 2005 the International Committee of Medical Journal Editors has required that trials be registered in accordance with the World Health Organization (WHO) minimum dataset, in order to be considered for publication. The objective is to evaluate registries' and individual trial records' compliance with the 2006 version of the WHO minimum data set. Methods A retrospective evaluation of 21 online clinical trial registries (international, national, specialty, pharmaceutical industry and local) from April 2005 to February 2007 and a cross-sectional evaluation of a stratified random sample of 610 trial records from the 21 registries. Results Among 11 registries that provided guidelines for registration, the median compliance with the WHO criteria were 14 out of 20 items (range 6 to 20). In the period April 2005–February 2007, six registries increased their compliance by six data items, on average. None of the local registry websites published guidelines on the trial data items required for registration. Slightly more than half (330/610; 54.1%, 95% CI 50.1% – 58.1%) of trial records completed the contact details criteria while 29.7% (181/610, 95% CI 26.1% – 33.5%) completed the key clinical and methodological data fields. Conclusion While the launch of the WHO minimum data set seemed to positively influence registries with better standardisation of approaches, individual registry entries are largely incomplete. Initiatives to ensure quality assurance of registries and trial data should be encouraged. Peer reviewers and editors should scrutinise clinical trial registration records to ensure consistency with WHO's core content requirements when considering trial-related publications. PMID:19624821

  8. Roles of cancer registries in enhancing oncology drug access in the Asia-Pacific region.

    PubMed

    Soon, Swee-Sung; Lim, Hwee-Yong; Lopes, Gilberto; Ahn, Jeonghoon; Hu, Min; Ibrahim, Hishamshah Mohd; Jha, Anand; Ko, Bor-Sheng; Lee, Pak Wai; Macdonell, Diana; Sirachainan, Ekaphop; Wee, Hwee-Lin

    2013-01-01

    Cancer registries help to establish and maintain cancer incidence reporting systems, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region. PMID:23725106

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

    PubMed Central

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

    2015-01-01

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

  10. Pulling long tubes from firmly adhered vesicles

    NASA Astrophysics Data System (ADS)

    Cuvelier, D.; Chiaruttini, N.; Bassereau, P.; Nassoy, P.

    2005-09-01

    We used optical tweezers to measure the force-extension curve for the elongation of nanotubes from adhered giant vesicles. We show that the force increases significantly with the length of the tube, which is drastically different from what is observed when the membrane tension is kept constant, e.g. by pipette aspiration. The absence of any force plateau is quantitatively analysed in the framework of the material model of membranes. In particular, we rationalize a counter-intuitive weaker force rise for long tubes and demonstrate that the measured force-length trace allows us to probe both the entropic regime (characterised by the bending rigidity) and the elastic regime (characterised by the area expansion modulus) of the lipid membrane.

  11. Quantification of dandruff adherence to hair.

    PubMed

    Piérard-Franchimont, C; Uhoda, E; Piérard, G E

    2005-10-01

    Dandruff adherence to hair shafts is a visible annoying phenomenon. The aspect can be recorded by different means including the ultraviolet light-enhanced visualization (ULEV) method and microscopy. We present another quantitative method. Hairs were clipped from the parietal scalp area of 25 volunteers complaining of dandruff. They were firmly applied onto cyanoacrylate-coated microscopic slides. Hairs were lifted up after 15-20 s leaving a cast in the adhesive coat. Dandruff were thus harvested from the hair shafts and remained attached to the cyanoacrylate coat. After staining, the material was submitted to image analysis to derive the dandruff density per unit length of hairs. In 11/25 subjects, a correlation was found between the width of the hair casts and the dandruff density. This method does not collect all dandruff along hair shafts, but data are likely representative of the whole corneocyte load. PMID:18492209

  12. Standardization of Patient Registries for Improved Data Collection and Outcome Measurement

    PubMed Central

    Spisla, Christine M.; Lundberg, Cynthia B.

    2012-01-01

    Patient registries provide key data for clinical trials, patient safety and disease progression research. Current standards are insufficient to guide consistent authoring and reuse of registry questions. An outcome measure and its accompanying measurable indicators provide the means for the collection of data over a continuum of care. These data can be translated into comparison research, supporting the development of evidence-based knowledge. Lack of standardized approach to question/answer authoring and identification of outcome measure indicators have been an obstacle to interoperability of registry data with electronic medical and personal health records. PMID:24199127

  13. What the newspapers say about medication adherence: a content analysis

    PubMed Central

    2013-01-01

    Background This study investigates the coverage of adherence to medicine by the UK and US newsprint media. Adherence to medicine is recognised as an important issue facing healthcare professionals and the newsprint media is a key source of health information, however, little is known about newspaper coverage of medication adherence. Methods A search of the newspaper database Nexis®UK from 2004–2011 was performed. Content analysis of newspaper articles which referenced medication adherence from the twelve highest circulating UK and US daily newspapers and their Sunday equivalents was carried out. A second researcher coded a 15% sample of newspaper articles to establish the inter-rater reliability of coding. Results Searches of newspaper coverage of medication adherence in the UK and US yielded 181 relevant articles for each country. There was a large increase in the number of scientific articles on medication adherence in PubMed® over the study period, however, this was not reflected in the frequency of newspaper articles published on medication adherence. UK newspaper articles were significantly more likely to report the benefits of adherence (p = 0.005), whereas US newspaper articles were significantly more likely to report adherence issues in the elderly population (p = 0.004) and adherence associated with diseases of the central nervous system (p = 0.046). The most commonly reported barriers to adherence were patient factors e.g. poor memory, beliefs and age, whereas, the most commonly reported facilitators to adherence were medication factors including simplified regimens, shorter treatment duration and combination tablets. HIV/AIDS was the single most frequently cited disease (reported in 20% of newspaper articles). Poor quality reporting of medication adherence was identified in 62% of newspaper articles. Conclusion Adherence is not well covered in the newspaper media despite a significant presence in the medical literature. The mass media have the

  14. Adherence to a Strength Training Intervention in Adult Women

    PubMed Central

    Arikawa, Andrea Y.; O’Dougherty, Maureen; Schmitz, Kathryn

    2010-01-01

    Background The factors influencing exercise adherence are not well characterized in women in their premenopausal years. Methods The purpose of this report is to provide an analysis of demographic factors contributing to women’s adherence to a two-year twice-weekly weight training intervention. Overweight and obese premenopausal women were randomized to a control or intervention group. Results During the supervised period of the intervention (months 1–4), adherence was significantly lower among those with a higher level of education and among unmarried women with children aged six to twelve compared to married women without children (F = 4.83, p = 0.004). Overall adherence during the supervised and unsupervised periods was 95.4% and 64.5%, respectively (unadjusted mean). During year 1, white women were significantly more adherent to the intervention (70.3%) than women of color (48.6%). Non-married women with children 13 years or older were significantly less adherent than married women with children 5 years or younger (36.3% vs 75.4%, respectively, p < 0.007). Overall adherence was 51.4% in year 2. Conclusions Interventions and public health recommendations need to further consider how to engage communities to provide effective support for long-term adherence to fitness center based exercise of all women, regardless of demographics. PMID:21297191

  15. Improving Adherence to Hand Hygiene among Health Care Workers

    ERIC Educational Resources Information Center

    Maskerine, Courtney; Loeb, Mark

    2006-01-01

    Increased adherence to hand hygiene is widely acknowledged to be the most important way of reducing infections in health care facilities. Despite evidence of benefit, adherence to hand hygiene among health care professionals remains low. Several behavioral and organizational theories have been proposed to explain this. As a whole, the success of…

  16. 29 CFR 1608.8 - Adherence to court order.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... APPROPRIATE UNDER TITLE VII OF THE CIVIL RIGHTS ACT OF 1964, AS AMENDED § 1608.8 Adherence to court order. Parties are entitled to rely on orders of courts of competent jurisdiction. If adherence to an Order of a United States District Court or other court of competent jurisdiction, whether entered by consent...

  17. 29 CFR 1608.8 - Adherence to court order.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... APPROPRIATE UNDER TITLE VII OF THE CIVIL RIGHTS ACT OF 1964, AS AMENDED § 1608.8 Adherence to court order. Parties are entitled to rely on orders of courts of competent jurisdiction. If adherence to an Order of a United States District Court or other court of competent jurisdiction, whether entered by consent...

  18. 29 CFR 1608.8 - Adherence to court order.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... APPROPRIATE UNDER TITLE VII OF THE CIVIL RIGHTS ACT OF 1964, AS AMENDED § 1608.8 Adherence to court order. Parties are entitled to rely on orders of courts of competent jurisdiction. If adherence to an Order of a United States District Court or other court of competent jurisdiction, whether entered by consent...

  19. 29 CFR 1608.8 - Adherence to court order.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... APPROPRIATE UNDER TITLE VII OF THE CIVIL RIGHTS ACT OF 1964, AS AMENDED § 1608.8 Adherence to court order. Parties are entitled to rely on orders of courts of competent jurisdiction. If adherence to an Order of a United States District Court or other court of competent jurisdiction, whether entered by consent...

  20. 29 CFR 1608.8 - Adherence to court order.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... APPROPRIATE UNDER TITLE VII OF THE CIVIL RIGHTS ACT OF 1964, AS AMENDED § 1608.8 Adherence to court order. Parties are entitled to rely on orders of courts of competent jurisdiction. If adherence to an Order of a United States District Court or other court of competent jurisdiction, whether entered by consent...

  1. Methodologies for medication adherence evaluation: Focus on psoriasis topical treatment.

    PubMed

    Teixeira, Ana; Teixeira, Maribel; Almeida, Vera; Torres, Tiago; Sousa Lobo, José Manuel; Almeida, Isabel Filipa

    2016-05-01

    Adherence to topical treatment has been less studied in comparison with systemic therapeutic regimens and is poorly understood. High-quality research on this area is essential to outline a strategy to increase medication adherence and clinical outcomes. For a more comprehensive understanding of this issue, a systematic review of the methodologies for topical treatment adherence evaluation in psoriasis was undertaken. Twenty one studies were selected from the literature which used six different adherence methodologies. Merely three studies used multiple adherence measurement methods. The most used method was questionnaire (44%) which was also associated with higher variability of the adherence results. One possible explanation is the lack of a validated questionnaire designed specifically for the evaluation of adherence to topical treatment. Only one method (medication weight) takes into consideration the applied dose. However, the estimation of the expected weight is complex, which renders this method, as used presently, less effective. The use of a dosing device could improve its accuracy and be helpful to clearly instruct the patients about the correct dose. As there is no single method that allows an accurate and complete assessment of adherence it is recommended to use a combination of methods, including self-report and medicines' weight measurements.

  2. Adherence to Pharmacological Treatment for Juvenile Bipolar Disorder

    ERIC Educational Resources Information Center

    Drotar, Dennis; Greenley, Rachel Neff; Demeter, Christine A.; McNamara, Nora K.; Stansbrey, Robert J.; Calabrese, Joseph R.; Stange, Jonathan; Vijay, Priya; Findling, Robert L.

    2007-01-01

    Objective: The objective of this study was to describe the prevalence and correlates of adherence to divalproex sodium (DVPX) and lithium carbonate (Li) combination treatment during the initial stabilization treatment phase. Method: Adherence to Li/DVPX combination therapy was measured by the presence or absence of minimum serum concentrations of…

  3. Medication Adherence in a Comparative Effectiveness Trial for Bipolar Disorder

    PubMed Central

    Sylvia, Louisa G.; Reilly-Harrington, Noreen A.; Leon, Andrew C.; Kansky, Christine I.; Calabrese, Joseph R.; Bowden, Charles L.; Ketter, Terence A.; Friedman, Edward S.; Iosifescu, Dan V.; Thase, Michael E.; Ostacher, Michael J.; Keyes, Michelle; Rabideau, Dustin; Nierenberg, Andrew A.

    2013-01-01

    Objective Psychopharmacology remains the foundation of treatment for bipolar disorder, but medication adherence in this population is low (Range = 20% to 64%). We examined medication adherence in a multi-site, comparative effectiveness study of lithium. Method The Lithium Moderate Dose Use Study (LiTMUS) was a six-month, six-site, randomized effectiveness trial of adjunctive moderate dose lithium therapy compared to optimized treatment in adult outpatients with bipolar I or II disorder (N=283). Medication adherence was measured at each study visit with the Tablet Routine Questionnaire. Results We found that 4.50% of participants reported missing at least 30% of their medications in the past week at baseline and non-adherence remained low throughout the trial (< 7%). Poor medication adherence was associated with more manic symptoms and side effects as well as lower lithium serum levels at mid- and post-treatment, but not with poor quality of life, overall severity of illness, or depressive symptoms. Conclusion Participants in LiTMUS were highly adherent with taking their medications. The lack of association with possible predictors of adherence, such as depression and quality of life, could be explained by the limited variance or other factors as well as by not using an objective measure of adherence. PMID:24117232

  4. 14 CFR 1260.72 - Adherence to original budget estimates.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... COOPERATIVE AGREEMENTS General Post-Award Requirements § 1260.72 Adherence to original budget estimates. (a) Although NASA assumes no responsibility for budget overruns, the recipient may spend grant funds without... 14 Aeronautics and Space 5 2012-01-01 2012-01-01 false Adherence to original budget...

  5. 14 CFR 1260.72 - Adherence to original budget estimates.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... COOPERATIVE AGREEMENTS General Post-Award Requirements § 1260.72 Adherence to original budget estimates. (a) Although NASA assumes no responsibility for budget overruns, the recipient may spend grant funds without... 14 Aeronautics and Space 5 2011-01-01 2010-01-01 true Adherence to original budget estimates....

  6. 14 CFR 1260.72 - Adherence to original budget estimates.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... COOPERATIVE AGREEMENTS General Post-Award Requirements § 1260.72 Adherence to original budget estimates. (a) Although NASA assumes no responsibility for budget overruns, the recipient may spend grant funds without... 14 Aeronautics and Space 5 2013-01-01 2013-01-01 false Adherence to original budget...

  7. Method for preventing micromechanical structures from adhering to another object

    DOEpatents

    Smith, J.H.; Ricco, A.J.

    1998-06-16

    A method for preventing micromechanical structures from adhering to another object includes the step of immersing a micromechanical structure and its associated substrate in a chemical species that does not stick to itself. The method can be employed during the manufacture of micromechanical structures to prevent micromechanical parts from sticking or adhering to one another and their associated substrate surface. 3 figs.

  8. Enhancing Commitment Improves Adherence to a Medical Regimen.

    ERIC Educational Resources Information Center

    Putnam, Dana E.; And Others

    1994-01-01

    Evaluated commitment-based intervention for improvement of adherence to 10-day antibiotic regimen. Subjects were 60 college students. Experimental subjects made verbal and written commitments for adherence and completed tasks designed to increase their investment in medication regimen. Controls performed similarly structured tasks unrelated to…

  9. Clinical Supervision in Treatment Transport: Effects on Adherence and Outcomes

    ERIC Educational Resources Information Center

    Schoenwald, Sonja K.; Sheidow, Ashli J.; Chapman, Jason E.

    2009-01-01

    This nonexperimental study used mixed-effects regression models to examine relations among supervisor adherence to a clinical supervision protocol, therapist adherence, and changes in the behavior and functioning of youths with serious antisocial behavior treated with an empirically supported treatment (i.e., multisystemic therapy [MST]) 1 year…

  10. Thirty-Three Years of Aerobic Exercise Adherence.

    ERIC Educational Resources Information Center

    Kasch, Frederick W.

    2001-01-01

    Followed 15 middle-aged men for 25-33 years while they participated in an aerobic exercise program. Adherence in the sample was 100 percent. Possible explanations for the adherence include program leadership, peer support, written evaluations and progress reports, emphasis on health, early and continued interest in sport and exercise, recognition…

  11. Medication Adherence in Older Adults: A Qualitative Study

    ERIC Educational Resources Information Center

    Holt, Elizabeth W.; Rung, Ariane L.; Leon, Kyla A.; Firestein, Catherine; Krousel-Wood, Marie

    2014-01-01

    To effectively address medication adherence and improve cardiovascular health among older adults, a deeper understanding is needed of the barriers that this age group faces and of approaches that would be most effective and feasible for improving adherence. We conducted a focus group study (n = 25) in a diverse population of older adults with…

  12. Cognitive-Behavioral Therapy for HIV Medication Adherence and Depression

    ERIC Educational Resources Information Center

    Safren, Steven A.; Hendriksen, Ellen S.; Mayer, Kenneth H.; Mimiaga, Matthew J.; Pickard, Robert; Otto, Michael W.

    2004-01-01

    For patients with HIV, depression is a common, distressing condition that can interfere with a critical self-care behavior--adherence to antiretroviral therapy. The present study describes a cognitive-behavioral treatment designed to integrate cognitive-behavioral therapy for depression with our previously tested approach to improving adherence to…

  13. Method for preventing micromechanical structures from adhering to another object

    DOEpatents

    Smith, James H.; Ricco, Antonio J.

    1998-01-01

    A method for preventing micromechanical structures from adhering to another object includes the step of immersing a micromechanical structure and its associated substrate in a chemical species that does not stick to itself. The method can be employed during the manufacture of micromechanical structures to prevent micromechanical parts from sticking or adhering to one another and their associated substrate surface.

  14. Teaching Medication Adherence in US Colleges and Schools of Pharmacy

    PubMed Central

    MacLean, Linda Garrelts; Hess, Karl; Farmer, Kevin C.; Yurkon, Afton M.; Ha, Carolyn C.; Schwartzman, Emmanuelle; Law, Anandi V.; Milani, Paul A.; Trotta, Katie; Labella, Sara R.; Designor, Rebecca J.

    2012-01-01

    Objective. To determine and describe the nature and extent of medication adherence education in US colleges and schools of pharmacy. Methods. A mixed-methods research study was conducted that included a national survey of pharmacy faculty members, a national survey of pharmacy students, and phone interviews of 3 faculty members and 6 preceptors. Results. The majority of faculty members and students agreed that background concepts in medication adherence are well covered in pharmacy curricula. Approximately 40% to 65% of the students sampled were not familiar with several adherence interventions. The 6 preceptors who were interviewed felt they were not well-informed on adherence interventions, unclear on what students knew about adherence, and challenged to provide adherence-related activities for students during practice experiences because of practice time constraints. Conclusions. Intermediate and advanced concepts in medication adherence, such as conducting interventions, are not adequately covered in pharmacy curriculums; therefore stakeholders in pharmacy education must develop national standards and tools to ensure consistent and adequate medication adherence education. PMID:22761520

  15. Treatment Adherence among Latina Female Adolescent Suicide Attempters.

    ERIC Educational Resources Information Center

    Rotheram-Borus, Mary Jane; Piacentini, John; Van Rossem, Ronan; Graae, Flemming; Cantwell, Coleen; Castro-Blanco, David; Feldman, Julie

    1999-01-01

    Disenfranchised Latina adolescents (N=140) and their mothers presenting at a large urban emergency room after a suicide attempt by the adolescent were assessed to examine treatment adherence. Predictor variables for treatment adherence were established. Results are discussed in relation to treatment session attendance. Implications for the…

  16. Ultrastructural study of Helicobacter pylori adherence properties in gnotobiotic piglets.

    PubMed Central

    Rudmann, D G; Eaton, K A; Krakowka, S

    1992-01-01

    Ultrastructural examination of gastric mucosa from Helicobacter pylori-infected gnotobiotic piglets identified four general adherence patterns comparable to those observed in human patients. Intimate associations between the bacterial and mucosal cell membranes, including cuplike invaginations and adherence pedestals, were present and were accompanied by alterations to microvilli and cell membrane morphology. Images PMID:1563801

  17. Component Analysis of Adherence in a Family Intervention

    ERIC Educational Resources Information Center

    Hill, Laura G.; Owens, Robert W.

    2013-01-01

    Purpose: Most studies of adherence use a single global measure to examine the relation of adherence to outcomes. These studies inform us about effects of overall implementation but not about importance of specific program elements. Previous research on the Strengthening Families Program 10-14 has shown that outcomes were unrelated to global…

  18. Adherence, shared decision-making and patient autonomy.

    PubMed

    Sandman, Lars; Granger, Bradi B; Ekman, Inger; Munthe, Christian

    2012-05-01

    In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients' preferences and autonomy in decision making around treatments. This 'adherence-paradigm' thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter.

  19. Genetic factors in exercise adoption, adherence and obesity.

    PubMed

    Herring, M P; Sailors, M H; Bray, M S

    2014-01-01

    Physical activity and exercise play critical roles in energy balance. While many interventions targeted at increasing physical activity have demonstrated efficacy in promoting weight loss or maintenance in the short term, long term adherence to such programmes is not frequently observed. Numerous factors have been examined for their ability to predict and/or influence physical activity and exercise adherence. Although physical activity has been demonstrated to have a strong genetic component in both animals and humans, few studies have examined the association between genetic variation and exercise adherence. In this review, we provide a detailed overview of the non-genetic and genetic predictors of physical activity and adherence to exercise. In addition, we report the results of analysis of 26 single nucleotide polymorphisms in six candidate genes examined for association to exercise adherence, duration, intensity and total exercise dose in young adults from the Training Interventions and Genetics of Exercise Response (TIGER) Study. Based on both animal and human research, neural signalling and pleasure/reward systems in the brain may drive in large part the propensity to be physically active and to adhere to an exercise programme. Adherence/compliance research in other fields may inform future investigation of the genetics of exercise adherence.

  20. Adherence of Bilophila wadsworthia to cultured human embryonic intestinal cells.

    PubMed

    Gerardo, S H; Garcia, M M; Wexler, H M; Finegold, S M

    1998-02-01

    Adherence of Bilophila wadsworthia to the cultured human embryonic intestinal cell line, Intestine 407 (Int 407), varied among the strains tested from strongly adherent (76-100% cells positive for one or more adherent bacteria) to non- or weakly adherent (0-25% positive cells). Although negative staining revealed that infrequent cells of an adherent strain, WAL 9077, the adherent type-strain, WAL 7959, and a non-adherent strain, WAL 8448, expressed loosely associated fimbrial structures, a role for these structures in adhesion could not be confirmed with either scanning or thin-section electron micrography. Ruthenium red staining of thin-section preparations and subsequent electron microscopy failed to reveal an extensive extracellular polysaccharide layer. SDS-PAGE analysis of crude outer membrane fractions of WAL 9077 and WAL 8448 demonstrated clear differences in their major and minor outer membrane protein components. Thus, we postulate that the adherence of B. wadsworthia to Int 407 cells is mediated by an outer membrane or cell wall component. PMID:16887620

  1. 14 CFR 1260.72 - Adherence to original budget estimates.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 5 2010-01-01 2010-01-01 false Adherence to original budget estimates. 1260.72 Section 1260.72 Aeronautics and Space NATIONAL AERONAUTICS AND SPACE ADMINISTRATION GRANTS AND COOPERATIVE AGREEMENTS General Post-Award Requirements § 1260.72 Adherence to original budget estimates....

  2. The Influence of Goal Setting on Exercise Adherence.

    ERIC Educational Resources Information Center

    Cobb, Lawrence E.; Stone, William J.; Anonsen, Lori J.; Klein, Diane A.

    2000-01-01

    Assessed the influence of fitness- and health-related goal setting on exercise adherence. Students in a college fitness program participated in goal setting, reading, or control groups. No significant differences in exercise adherence were found. Students enrolled for letter grades had more fitness center visits and hours of activity than students…

  3. ENHANCE—(Electronic Hydroxyurea Adherence): A Protocol to Increase Hydroxyurea Adherence in Patients with Sickle Cell Disease

    PubMed Central

    Chisolm, Deena J; O’Brien, Sarah H

    2016-01-01

    Background Hydroxyurea (HU) is the only disease-modifying medication for patients with sickle cell disease (SCD). HU can reduce SCD-related complications but only 35% to 50% of pediatric patients adhere to HU at the rates achieved in clinical trials and this limits its clinical effectiveness. Mobile Directly Observed Therapy (Mobile DOT) is a pilot-tested, electronic, multidimensional, HU adherence intervention that targets many components of the Health Behavior Model. Objective The aim of this study is to evaluate the impact of Mobile DOT on HU adherence in children with SCD. The objective of our study is to inform the development of future adherence interventions and pediatric SCD protocols. Methods This is a single-arm crossover study of pediatric patients with SCD. Participants self-record videos of their daily HU administrations and receive text message alerts to take HU, feedback on their HU adherence, and incentives when they achieve adherence goals during the 6-month Mobile DOT phase. Participants’ HU adherence during the Mobile DOT phase is compared with their baseline HU adherence (6 months prior to study entry) and to their HU adherence 6 months after completing the Mobile DOT phase. The primary outcome of this study is HU adherence measured by medication possession ratio. Results The trial is ongoing. Preliminary review of participant satisfaction results suggest that most participants can complete Mobile DOT in less than 5 minutes per day and are satisfied with the intervention. Conclusions If effective, the Mobile DOT strategy will increase HU adherence and this could improve patients’ clinical outcomes and reduce costs of care. PMID:27697749

  4. Quantification of the Forgiveness of Drugs to Imperfect Adherence.

    PubMed

    Assawasuwannakit, P; Braund, R; Duffull, S B

    2015-03-01

    The circumstance of how sensitive therapeutic success is under imperfect adherence is driven by the property known as forgiveness. To date, no studies have considered variability in the pharmacokinetic-pharmacodynamic process in conjunction with imperfect adherence patterns in order to develop a comparative criterion to determine the forgiveness of a drug. In this study, we have proposed a criterion to quantify forgiveness; illustrated the criterion for a theoretical example and evaluated the forgiveness of a motivating example, namely warfarin. A forgiveness criterion, relative forgiveness, is defined as the number of times more likely that a target is successfully attained under perfect adherence compared to imperfect adherence; or when comparing two drugs under a standard setting of imperfect adherence. The relative forgiveness criterion may have important implications for both drug development and clinical practice since the choice of drug can account for the likely influence of its forgiveness. PMID:26225235

  5. Interventional tools to improve medication adherence: review of literature

    PubMed Central

    Costa, Elísio; Giardini, Anna; Savin, Magda; Menditto, Enrica; Lehane, Elaine; Laosa, Olga; Pecorelli, Sergio; Monaco, Alessandro; Marengoni, Alessandra

    2015-01-01

    Medication adherence and persistence is recognized as a worldwide public health problem, particularly important in the management of chronic diseases. Nonadherence to medical plans affects every level of the population, but particularly older adults due to the high number of coexisting diseases they are affected by and the consequent polypharmacy. Chronic disease management requires a continuous psychological adaptation and behavioral reorganization. In literature, many interventions to improve medication adherence have been described for different clinical conditions, however, most interventions seem to fail in their aims. Moreover, most interventions associated with adherence improvements are not associated with improvements in other outcomes. Indeed, in the last decades, the degree of nonadherence remained unchanged. In this work, we review the most frequent interventions employed to increase the degree of medication adherence, the measured outcomes, and the improvements achieved, as well as the main limitations of the available studies on adherence, with a particular focus on older persons. PMID:26396502

  6. Adherence and the Lie in a HIV Prevention Clinical Trial

    PubMed Central

    Stadler, Jonathan; Scorgie, Fiona; van der Straten, Ariane; Saethre, Eirik

    2016-01-01

    The lie has been presented as a performance that protects identities against moral judgment in the context of power imbalances. We explore this assertion from the perspective of a pre-exposure prophylaxis trial to prevent HIV for African women in South Africa, in which context biological evidence of widespread lying about product adherence was produced, resulting in a moral discourse that opposed altruistic and selfish motivations. In this article, we seek to understand the meaning of the lie from the perspective of women trial participants. Seeing the trial as representing a hopeful future, and perfect adherence as sustaining their investment in this, participants recited scripted accounts of adherence and performed the role of the perfect adherer, while identifying other participants as dishonest. Given that clinical trials create moral orders and adherence is key to this, we argue that women embraced the apparatus of the clinical trial to assert their moral subjectivities. PMID:26575611

  7. What Time is it? Adherence to Antiretroviral Therapy in Ethiopia

    PubMed Central

    Tiruneh, Yordanos M.; Wilson, Ira B.

    2016-01-01

    This study assessed adherence to antiretroviral therapy (ART) among people living with HIV/AIDS in Ethiopia and explored the sociocultural context in which they relate to their regimen requirements. Data were collected through semi-structured in-depth interviews with 105 patients on ART and observations held at the study clinic. We analyzed data using both qualitative and quantitative methods. Our findings indicate that study participants are highly adherent to dose but less adherent to dose schedule. Strict dose time instructions were reported as stressful and unrealistic. The discrepancy between adherence to dose and dose schedule could be explained by time perception, difficulty with the strictness of medication regimens, or beliefs about dose timing adherence. Care providers should acknowledge the complexities of medication practices and engage in shared decision-making to incorporate patients’ perspectives and identify effective interventions. PMID:26873491

  8. A Registry for Evaluation of Efficiency and Safety of Surgical Treatment of Cartilage Defects: The German Cartilage Registry (KnorpelRegister DGOU)

    PubMed Central

    2016-01-01

    Background The need for documentation in cartilage defects is as obvious as in other medical specialties. Cartilage defects can cause significant pain, and lead to reduced quality of life and loss of function of the affected joint. The risk of developing osteoarthritis is high. Therefore, the socioeconomic burden of cartilage defects should not be underestimated. Objective The objective of our study was to implement and maintain a registry of all patients undergoing surgical treatment of cartilage defects. Methods We designed this multicenter registry for adults whose cartilage defects of a knee, ankle, or hip joint are treated surgically. The registry consists of two parts: one for the physician and one for the patient. Data for both parts will be gathered at baseline and at 6-, 12-, 24-, 36-, 60-, and 120-month follow-ups. Results To date, a wide range of German, Swiss, and Austrian trial sites are taking part in the German Cartilage Registry, soon to be followed by further sites. More than 2124 (as of January 31, 2016) cases are already documented and the first publications have been released. Conclusions The German Cartilage Registry addresses fundamental issues regarding the current medical care situation of patients with cartilage defects of knee, ankle, and hip joints. In addition, the registry will help to identify various procedure-specific complications, along with putative advantages and disadvantages of different chondrocyte products. It provides an expanding large-scale, unselected, standardized database for cost and care research for further retrospective studies. Trial Registration German Clinical Trials Register: DRKS00005617; https://drks-neu.uniklinik-freiburg.de/ drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00005617 (Archived by WebCite at http://www.webcitation.org/6hbFqSws0) PMID:27357998

  9. [Considerations on what we can (and what we should not) ask to registries].

    PubMed

    Addis, Antonio; Berti, Elena; De Palma, Rossana; Fiori, Giovanni; Papini, Donato; Traversa, Giuseppe

    2015-09-01

    This article presents a summary of the discussion which took place during the works of PRIER II in the session dedicated to the methodology of registries. Following a thorough analysis of the possible methods and the limits which deal with the collection of clinical data through the registries, the different points of view were compared, perhaps the most relevant, related to this activity. All this has been done by taking advantage by the possibility to observe aspects from different points of view. In particular, the exercise considered those who have to deal with the methodological aspects of the registries as an operator of public health or as a private operator who creates services for companies. The final goal, again, was to line up a few essential points accompanied by reasoning and comments useful to anyone who wants to address the issue of registries from the methodological point of view. PMID:26418506

  10. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-13

    ... Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... announces the availability of a new Veterinary Services email subscription service. FOR FURTHER INFORMATION... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently. PMID:27577423

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

    PubMed

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

    2016-01-01

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

  15. Effects of record linkage errors on registry-based follow-up studies.

    PubMed

    Brenner, H; Schmidtmann, I; Stegmaier, C

    1997-12-15

    The importance of reliable record linkage for high quality-population-based disease registration is widely recognized. Systematic methodologic work is lacking, however, on the effects of record linkage errors on the use of disease registries for epidemiologic purposes. The present paper provides algebraic models describing the effects of record linkage errors on monitoring survival of registered patients, which is commonly performed by matching registry records against a database of death certificates, and on registry-based incidence follow-up of external cohorts. Homonym errors, that is, erroneous linkage of records that pertain to distinct individuals, lead to underestimation of survival of registered patients and to overestimation of disease incidence among external cohorts linked to the registry, while synonym errors, that is, failure to link notifications on the same individual, have opposite effects. The magnitude of effects of record linkage errors are illustrated with numerical examples.

  16. Research recruitment through US central cancer registries: balancing privacy and scientific issues.

    PubMed

    Beskow, Laura M; Sandler, Robert S; Weinberger, Morris

    2006-11-01

    Cancer registries are a valuable resource for recruiting participants for public health-oriented research, although such recruitment raises potentially competing concerns about patient privacy and participant accrual. We surveyed US central cancer registries about their policies for research contact with patients, and results showed substantial variation. The strategy used most frequently (37.5% of those that allowed patient contact), which was among the least restrictive, was for investigators to notify patients' physicians and then contact patients with an opt-out approach. The most restrictive strategy was for registry staff to obtain physician permission and contact patients with an opt-in approach. Population-based studies enhance cancer control efforts, and registry policies can affect researchers' ability to conduct such studies. Further discussion about balanced recruitment approaches that protect patient privacy and encourage beneficial research is needed.

  17. Medical devices; revocation of cardiac pacemaker registry. Food and Drug Administration, HHS. Final rule.

    PubMed

    1999-11-24

    The Food and Drug Administration (FDA) is issuing a final rule to revoke a regulation requiring a cardiac pacemaker registry. The registry, which was mandated by the Deficit Reduction Act of 1984, requires any physician and any provider of services who requests or receives Medicare payment for an implantation, removal, or replacement of permanent cardiac pacemaker devices and pacemaker leads to submit certain information to the registry. The information is used by FDA to track the performance of permanent cardiac pacemakers and pacemaker leads and by the Health Care Finance Administration (HCFA) to administer its Medicare payment program for these devices. This action is being taken to implement an act to Repeal An Unnecessary Medical Device Reporting Requirement passed by Congress in 1996 to remove the cardiac pacemaker registry to eliminate duplicative and unnecessary reporting. PMID:11010690

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

    PubMed

    Löpprich, Martin; Knaup, Petra

    2016-01-01

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

  19. [Importance of the National Childhood Cancer Registry in the field of paediatric oncology care in Hungary].

    PubMed

    Garami, Miklós; Schuler, Dezső; Jakab, Zsuzsanna

    2014-05-11

    National Childhood Cancer Registry has been operated since 1971 by the Hungarian Paediatric Oncology Network. This Registry collects data on epidemiology, treatment modalities and effectiveness, as well as late follow-up of childhood cancers. An internet-based paediatric cancer registration and communication system for the Hungarian Paediatric Oncology Network has been introduced in April, 2010. The National Childhood Cancer Registry contains data of all paediatric cancer patients (0-18 yrs) who have insurance covered by the Hungarian Social Security Card. Creation (1971) and operation of the National Childhood Cancer Registry have been very important steps in the field of childhood oncology to evaluate the efficiency of paediatric oncology treatments as well as maximize return on medical investment.

  20. United States Transuranium and Uranium Registries. Annual report February 1, 2001--January 31, 2002

    SciTech Connect

    Ehrhart, Susan M.; Filipy, Ronald E.

    2002-07-01

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.

  1. 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

    ... From the Federal Register Online via the Government Publishing Office ] DEPARTMENT OF COMMERCE National Oceanic and Atmospheric Administration RIN 0648-XX66 The National Saltwater Angler Registry....Colvin@noaa.gov SUPPLEMENTARY INFORMATION: The final rule implementing the National Saltwater...

  2. Thai Twin Registry: description of the initial stage.

    PubMed

    Nanakorn, Somsong; Chusilp, Kusuma; Kutanan, Wibhu

    2013-02-01

    The present study describes the initial phase of the Thai Twin Registry (TTR) in Khon Kaen University, a pioneer research university located in the Northeast of Thailand. The initial steps of the study included the analysis of dermatoglyphic information in Thai twins for answering the research question: Are monozygotic (MZ) and dizygotic (DZ) twins different in dermatoglyphic variables? Subjects were 212 twin pairs (131 MZ and 81 [corrected] DZ), consisting of 155 males and 269 females. Four types of fingerprint pattern (FP) - that is, arch, radial loop, ulnar loop, and whorl - were classified and analyzed and compared between MZ and DZ twins. The arch radial loop and whorl frequencies differ between MZ and DZ twins. When comparing FP in each finger, only the right little finger shows a statistically different FP, while the FP similarity average from 10 homologous fingers of co-twins was greater in MZ than DZ twins. By using the Area Under the Receiver Operating Characteristic curve analysis, the MZ twins could be differentiated from DZ twins by the FP similarity. Summarizing, this valuable report about TTR was conducted by analysis of FP data, which indicated that the MZ and DZ twins exhibited FP pattern and FP similarity differences. Other dermatoglyphic studies of the existing FP database, such as finger ridge count, finger ridge density, and minutia, will be considered for ongoing research at the TTR.

  3. The National ALS Registry: A Recruitment Tool for Research

    PubMed Central

    Malek, Angela M.; Stickler, David E.; Antao, Vinicius C.; Horton, D. Kevin

    2014-01-01

    Introduction Subject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The US population-based National ALS Registry allows recruitment of persons with ALS (PALS) for research opportunities. Methods The Registry’s Research Notification Mechanism was used to recruit PALS aged ≥21 years; participants completed a web-based epidemiologic survey. PALS (n=2,232) were sent an email describing the study, and 268 surveys were completed. Results The mean age (± SD) of eligible participants was 57.7 ± 9.3 years for men and 61.5 ± 8.9 for women. Most were men (63%) and Caucasian (92%). Of 256 potentially eligible participants, 37.5% (n=96) returned an authorization to disclose protected health information. ALS was confirmed for 94% (83/88) from physician responses. Discussion This analysis demonstrates the National ALS Registry’s usefulness in recruiting PALS for research. This recruitment source can potentially foster the discovery of better treatment options and therapies, and of prevention strategies. PMID:25111654

  4. The origin of registry-based medical research and care.

    PubMed

    Irgens, L M

    2012-01-01

    During the last decades, registers comprising medical data have played an increasingly important role in medicine, both in health care and research. It is reasonable to expect that their importance will also increase in the future. Thus, a search for the origin of register-based medicine seems meaningful. Admittedly, collections of individual data on a number of patients may have occurred way back in history (Tidsskr Nor Laegeforen, 96, 1976:295). However, if we accept WHO's definition of a register, it implies more than a number of notifications. A register requires that a permanent record be established, that the cases be followed up and that basic statistical tabulations be prepared both on frequency and survival (Epidemiological Methods on the study of chronic diseases, Geneva, WHO Expert committee on Health Statistics, 1967). Thus, a register should aim at improving surveillance, health care and research. If we apply these criteria, we find the origin of register-based medicine in Norway in terms of the National Leprosy Registry, representing the world's first national patient register for any disease, established 1856 (Int J Epidemiol, 2, 1973: 81).

  5. Dioxin Registry report for Thompson Chemical Company, St. Louis, Missouri

    SciTech Connect

    Marlow, D.A.; Fingerhut, M.A.

    1991-01-01

    An industrial hygiene survey was conducted at the Thompson Chemical Company, St. Louis, Missouri. The company manufactured sodium-2,4,5-trichlorophenate (NaTCP), 2,4,5-trichlorophenoxyacetic-acid (2,4,5-T), and esters and amines of 2,4,5-T from 1949 through 1970. The company manufactured Agent-Orange for the Air Force from 1967 until 1969. The facility, its processes, its workforce, and 2,3,7,8-tetrachlorodibenzo-p-dioxin (1746016) (TCDD) analytical results for these products were examined. As this firm filed for bankruptcy in 1970, there was only limited data available. The facility employed about 12 persons year round and about double this number during the busy season and during the Agent-Orange contract. Almost no information was available about the production processes. Nine persons developed chloracne after an accident and fire in the NaTCP process. Few personnel records were available. The authors conclude that workers employed from 1949 through 1970 are suitable for inclusion into the Dioxin Registry. There is not enough information available to construct a TCDD exposure matrix for this site.

  6. Postirradiation sarcoma. Analysis of a nationwide cancer registry material

    SciTech Connect

    Wiklund, T.A.; Blomqvist, C.P.; Raety, J.E.; Elomaa, I.; Rissanen, P.; Miettinen, M. )

    1991-08-01

    Thirty-three cases of postirradiation sarcoma (PIS) from the files of the Finnish Cancer Registry were analyzed. The most frequent first primary tumors were cancers of the breast (seven cases) and female reproductive organs (13 cases). Five patients had a childhood cancer. The median total radiation dose at the site of the PIS was 3600 cGy (1600 cGy to 11200 cGy). The median interval from start of radiation therapy to detection of PIS was 13.2 years (3.4 to 22.8 years). The PIS was of soft tissue origin in 25 of 33 cases. The most frequent histologic types were osteosarcoma (ten cases, including four extraskeletal tumors), malignant fibrous histiocytoma (ten cases), and fibrosarcoma (six cases). The overall crude 5-year survival rate was 29% (calculated from the start of treatment for PIS), and for patients initially treated with either radical surgery or combined marginal surgery and postoperative irradiation it was 67%. The authors conclude that there is a chance for cure for radically treated patients with postirradiation sarcoma that emphasizes the importance of regular long-term follow-up of cancer patients.

  7. Dioxin registry report of Monsanto Company, Nitro, West Virginia

    SciTech Connect

    Marlow, D.A.; Fingerhut, M.A.; Piacitelli, L.A.

    1989-08-01

    Information was collected concerning the Monsanto Company, Nitro, West Virginia, for the purpose of evaluating the procedures and the data available to determine if this company would be suitable for inclusion in a study of the causes of death among workers exposed to products contaminated with 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD) or hexachlorodibenzo-p-dioxins (HxCDD). Sodium-2,4,5-trichlorophenate (Na-2,4,5-TCP) and 2,4,5-trichlorophenoxyacetic-acid (2,4,5-T-acid) were produced at the facility, and both compounds have been shown to be contaminated with TCDD. Based on the information gathered from Monsanto concerning Na-2,4,5-TCP and 2,4,5-T-acid production processes, the workers involved were suitable for inclusion in the NIOSH Dioxin Registry study. Work histories for these workers could be constructed. Descriptions of the tasks performed in the various processes through the years were available. Analytical data was available for the years 1958 through 1969 and could be combined with the work histories, the knowledge of the tasks performed, and the concentration of TCDD in the 2,4,5-T-acid.

  8. Improving adherence to oral cancer therapy in clinical practice.

    PubMed

    McCue, Debbie A; Lohr, Lisa K; Pick, Amy M

    2014-05-01

    Adherence to oral chemotherapy regimens maximizes their effectiveness and minimizes any potential toxicities. Factors specifically related to the treatment, patient, and health care provider may influence medication adherence. Treatment-related factors include the complexity of the regimen, the cost of therapy, the possibility of side effects, and the delay in treatment benefits. Meanwhile, patients may not have an adequate support system or an understanding of the need for the medication, and providers may not fully succeed in communicating the importance of adherence and the types of side effects that may occur. Nonadherence may lead to an increased risk of toxicity, decreased effectiveness, and increased utilization of health care resources. Although various methods for measuring adherence are available, self-reporting is the most widely used. Studies describing adherence in a broad range of cancers are reviewed. Treatment of chronic myeloid leukemia has been revolutionized by the development of oral tyrosine kinase inhibitors that are highly effective in managing the disease when taken consistently. However, nonadherence is relatively common and can lead to reduced rates of response and increased medical costs. Similar effects of nonadherence on outcome and cost have also been observed in patients with various other hematologic malignancies and solid tumors. Interventions to improve adherence to oral chemotherapy regimens include communication about the importance of adherence and the potential consequences of nonadherence, simplification of the patient's medication schedule (if possible), and inclusion of a caregiver or family member in the conversation. Written materials should always be provided to accompany verbal instructions. This review summarizes factors influencing medication adherence, impact of nonadherence on patient outcomes, methods for measuring adherence, previous studies of nonadherence in patients with cancer, common barriers to access, and

  9. Determinants of patient adherence: a review of systematic reviews

    PubMed Central

    Kardas, Przemyslaw; Lewek, Pawel; Matyjaszczyk, Michal

    2013-01-01

    Purpose: A number of potential determinants of medication non-adherence have been described so far. However, the heterogenic quality of existing publications poses the need for the use of a rigorous methodology in building a list of such determinants. The purpose of this study was a systematic review of current research on determinants of patient adherence on the basis of a recently agreed European consensus taxonomy and terminology. Methods: MEDLINE, EMBASE, CINAHL, Cochrane Library, IPA, and PsycINFO were systematically searched for systematic reviews published between 2000/01/01 and 2009/12/31 that provided determinants on non-adherence to medication. The searches were limited to reviews having adherence to medication prescribed by health professionals for outpatient as a major topic. Results: Fifty-one reviews were included in this review, covering 19 different disease categories. In these reviews, exclusively assessing non-adherence to chronic therapies, 771 individual factor items were identified, of which most were determinants of implementation, and only 47—determinants of persistence with medication. Factors with an unambiguous effect on adherence were further grouped into 8 clusters of socio-economic-related factors, 6 of healthcare team- and system-related factors, 6 of condition-related factors, 6 of therapy-related factors, and 14 of patient-related factors. The lack of standardized definitions and use of poor measurement methods resulted in many inconsistencies. Conclusions: This study provides clear evidence that medication non-adherence is affected by multiple determinants. Therefore, the prediction of non-adherence of individual patients is difficult, and suitable measurement and multifaceted interventions may be the most effective answer toward unsatisfactory adherence. The limited number of publications assessing determinants of persistence with medication, and lack of those providing determinants of adherence to short-term treatment identify

  10. Treatment adherence in multiple sclerosis: a survey of Belgian neurologists

    PubMed Central

    Decoo, Danny; Vokaer, Mathieu

    2015-01-01

    Background Poor treatment adherence is common among patients with multiple sclerosis (MS). This survey evaluated neurologists’ perception of treatment adherence among MS patients. Materials and methods This questionnaire-based survey of Belgian neurologists treating MS patients was conducted between June and July 2014. Face-to-face interviews with the neurologists were based on a semistructured questionnaire containing questions regarding the perception of the treatment-adherence level. Results A total of 41 neurologists participated in the survey. Of these, 88% indicated frequent discussions about treatment adherence as beneficial for treatment efficacy. The mean time spent on the treatment-adherence discussion during the initial consultation was 11 minutes, with 24% of doctors spending 5 minutes and 24% of doctors spending 10 minutes discussing this issue. The majority of neurologists (56%) perceived the adherence level in MS as good, and 12% perceived it as excellent. The majority of neurologists (64%) indicated intolerance as a main cause of poor adherence, and all neurologists reported insufficient efficacy as a consequence of nonadherence. The importance of adherence in the neurologists’ practice was evaluated on a scale of 1–10, with 1= “not very important” and 10= “very important”: 44% of doctors indicated a score of 10, and the mean score was 9.0. Conclusion Belgian neurologists consider treatment adherence in MS as essential for the benefits of therapies. However, although neurologists are aware of the consequences of nonadherence, they generally spend limited time discussing the importance of treatment adherence with their patients. PMID:26640373

  11. Maximizing patient adherence for optimal outcomes in psoriasis.

    PubMed

    Bewley, A; Page, B

    2011-06-01

    Psoriasis is a chronic, disabling disease in which adherence to treatment is often poor. The aim of this article is to highlight the problem of adherence to long-term treatment in psoriasis and the factors that contribute to it, and to discuss how adherence, and thus outcomes, can be improved. This article is based on a presentation given by the authors at a satellite symposium held during the 19th Congress of the European Academy of Dermatology and Venereology, 6-10 October, 2010, in Gothenburg, Sweden. Adherence to topical medication is a major problem in psoriasis. Not only are prescriptions not being filled by patients (primary adherence) but topical medications are not being used as recommended (secondary adherence). The issue is complex due to the many factors which affect adherence, including efficacy, ease of use and convenience of application, and the healthcare professional-patient relationship. Due to the nature of the disease, patients suffer poor self-image and feel stigmatized, particularly when psoriasis is present on a visible part of the body. Consequently, the negative impact of psoriasis on patient quality of life underlies many adherence issues. It is therefore important for treatment to address the psychological aspects as well as the physical symptoms of psoriasis. Improvements in several areas of disease management may lead to benefits in medication adherence and hence clinical benefit. Prescribing therapy in line with patient preference for treatment vehicle and improving the healthcare professional-patient relationship may be key factors. Nurses have an important role in educating patients and delivering long-term care. This individualized, personal, approach may help improve treatment adherence, outcomes, and the quality of life for patients with psoriasis. PMID:21507078

  12. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    PubMed

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver.

  13. Design and Development of a Web-Based Saudi National Diabetes Registry

    PubMed Central

    Subhani, Shazia; Khalid, Al-Rubeaan

    2010-01-01

    Background Given that diabetes is an extremely common disorder in Saudi Arabia, the National Diabetes Registry was designed by King Saud University Hospital Diabetes Center in collaboration with King Faisal Specialist Hospital & Research Center, Riyadh, Saudi Arabia, in the year 2001. The aim of the registry is to identify risk factors related to diabetes and to provide statistics to public health programs and health care professionals for use in planning and evaluation. The registry was designed to provide information on the extent and nature of specific types of diabetes, diabetes complications, and treatment of diabetes in the Kingdom. The registry has been available since 2001, with major collaborations from 26 hospitals as part of Phase I in which 100,000 patient data is to be collected on a regional level from Ar-Riyadh before extending the program to other regions of Saudi Arabia. Methods The web application was designed using relational database techniques along with on-line help topics to assist users to get acquainted with application functionalities. All Internet forms were designed with validation checks and appropriate messages to ensure quality of data. The security measures established within the application ensure that only authorized users can gain access to the functionalities of the registry at allowed times. Administrative features were designed to manage the registry-related operations easily. Results The diabetes registry has been in operation for almost 10 years, and around 67,000 patients have been registered to date. The Web-application offers an anytime-anywhere access to the registry’s data, removing geographical boundaries and allowing the national registry to provide real-time data entry, updates, reporting, and mapping functionalities more easily. Conclusion Merging related information in the form of databases can provide improved health care operations through instant access to data, ease of managing complex data structures, and

  14. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community.

    PubMed

    Ostraat, Michele L; Mills, Karmann C; Guzan, Kimberly A; Murry, Damaris

    2013-01-01

    The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the Registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN) has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (http://www.nanomaterialregistry.org) currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.

  15. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community

    PubMed Central

    Ostraat, Michele L; Mills, Karmann C; Guzan, Kimberly A; Murry, Damaris

    2013-01-01

    The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community’s level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the Registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN) has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (http://www.nanomaterialregistry.org) currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers. PMID:24098075

  16. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    PubMed

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver. PMID:26188310

  17. Renal replacement therapy in Europe: a summary of the 2011 ERA–EDTA Registry Annual Report

    PubMed Central

    Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.

    2014-01-01

    Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881

  18. Tribal Linkage and Race Data Quality for American Indians in a State Cancer Registry

    PubMed Central

    Johnson, Jennifer C.; Soliman, Amr S.; Tadgerson, Dan; Copeland, Glenn E.; Seefeld, David A.; Pingatore, Noel L.; Haverkate, Rick; Banerjee, Mousumi; Roubidoux, Marilyn A.

    2014-01-01

    Background Racial misclassification of American Indian and Alaska Native (AI/AN) individuals as non-AI/AN in cancer registries presents problems for cancer surveillance, research, and public health practice. The aim of this study was to investigate the efficiency of tribal linkages in enhancing the quality of racial information in state cancer registries. Methods Registry Plus™ Link Plus 2.0 probabilistic record linkage software was used to link the Michigan state cancer registry data (1985–2004; 1,031,168 cancer cases) to the tribal membership roster (40,340 individuals) in July of 2007. A data set was created containing AI/AN cancer cases identified by the state registry, Indian Health Service (IHS) linkages, and tribal linkage. The differences between these three groups of individuals were compared by distribution of demographic, diagnostic, and county-level characteristics using multilevel analysis (conducted in 2007–2008). Results From 1995 to 2004, the tribal enrollment file showed linkages to 670 cancer cases (583 individuals) and the tribal linkage led to the identification of 190 AI/AN cancer cases (168 individuals) that were classified as non-AI/AN in the registry. More than 80% of tribal members were reported as non-AI/AN to the registry. Individuals identified by IHS or tribal linkages were different from those reported to be AI/AN in terms of stage at diagnosis, tumor confirmation, and characteristics of the county of diagnosis, including contract health services availability, tribal health services availability, and proportion of AI/AN residents. Conclusions The data linkage between tribal and state cancer registry data sets improved racial classification validity of AI/AN Michigan cancer cases. Assessing tribal linkages is a simple, noninvasive way to improve the accuracy of state cancer data for AI/AN populations and to generate tribe-specific cancer information. PMID:19356888

  19. The NeuroAiD Safe Treatment (NeST) Registry: a protocol

    PubMed Central

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

    2015-01-01

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

  20. The importance of national registries/databases in metabolic surgery: the UK experience.

    PubMed

    Hopkins, James; Welbourn, Richard

    2016-07-01

    The United Kingdom (UK) National Bariatric Surgery Registry (NBSR) is a registry of self-reported bariatric surgery from members of the British Obesity and Metabolic Surgery Society. We describe the registry and its usefulness and limitations in improving the knowledge base for metabolic and bariatric surgery, reviewing the main results for the first 5 years of its introduction since 2009. We also review the reports of other national and international bariatric surgery registries and compare the baseline characteristics, including metabolic parameters, of the patients entered into the NBSR. A total of 161 surgeons from 137 UK bariatric surgery units entered 32,212 anonymized patient records. Of these patients, 76% were female, mean weight at preoperative clinic was 135.6 kg, body mass index was 48.8 kg/m(2), and 76.5 % had publicly funded National Health Service treatment. The 3 most common procedures were gastric bypass (55.3%), gastric banding (20.4%), and sleeve gastrectomy (20.2%), although the prevalence of these changed over time and was different between public and private sectors. The 2-year rate for diabetes improvement was 61.5%, but this varied with the duration of diabetes and baseline diabetic therapy. The data were similar to those from other large registries. Establishment of large national registries such as the NBSR has the potential to provide "real-world" information for quality assurance and the effect of metabolic and bariatric surgery on the whole operated population. PMID:27313193