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

    PubMed Central

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

    2014-01-01

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

  3. JBEI Registry

    SciTech Connect

    Ham, Timothy

    2008-12-01

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

  4. eSTAR: a distributed telescope network

    NASA Astrophysics Data System (ADS)

    Steele, Iain A.; Naylor, Tim; Allan, Alisdair; Etherton, Jason; Mottram, C. J.

    2002-11-01

    The e-STAR (e-Science Telescopes for Astronomical Research) project uses GRID techniques to develop the software infrastructure for a global network of robotic telescopes. The basic architecture is based around Intelligent Agents which request data from Discovery Nodes that may be telescopes or databases. Communication is based on a development of the XML RTML language secured using the Globus I/O library, with status serving provided via LDAP. We describe the system architecture and protocols devised to give a distributed approach to telescope scheduling, as well as giving details of the implementation of prototype Intelligent Agent and Discovery Node systems.

  5. 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

  6. 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

  7. 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.

  8. 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

  9. 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.

  10. 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...

  11. 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. PMID:23070491

  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. Chapter 43: Registry Clients

    NASA Astrophysics Data System (ADS)

    Greene, G.; Plante, R.

    The registry is a central component for the development of astronomical tools and applications requiring search and discovery. It contains standard descriptions for a variety of astronomical resources and services, including methods for remote invocation. Using web service technology, programmatic interfaces to the registry offer a powerful and robust mechanism for extracting specific sets of services and also a framework for combining a variety of astronomical resources into complex applications, for example, Datascope, Open SkyQuery, and WESIX. While the legacy of the NVO does not extend far back into history, we present here the current state of interfaces that client applications and tools have been built on, yet also extend the concepts to the new standard Registry Interface which will provide a uniform client interface protocol throughout the IVOA registry network. We explore this technology and discuss several implementations that exist in the current VO framework using JAVA, C#, Python, and IDL.

  14. Trauma registry reengineered.

    PubMed

    Wargo, Christina; Bolig, Nicole; Hixson, Heather; McWilliams, Nate; Rummerfield, Heather; Stratton, Elaine; Woodruff, Tracy

    2014-01-01

    A successful trauma registry balances accuracy of abstraction and timeliness of case submissions to achieve quality performance. Staffing to achieve quality performance is a challenge at times based on competitive institutional need. The aim of this performance improvement timing study was to identify trauma registry job responsibilities and redesign the responsibilities to create increased abstraction time and maintain accuracy of data abstraction. The outcome is measured by case submission rates with existing staffing and interrater reliability outcomes. PMID:25397337

  15. Southern Saskatchewan Ticagrelor Registry experience

    PubMed Central

    Dehghani, Payam; Chopra, Varun; Bell, Ali; Kelly, Sheila; Zulyniak, Lori; Booker, Jeff; Zimmermann, Rodney; Semchuk, William; Cheema, Asim N; Lavoie, Andrea J

    2014-01-01

    Background As ticagrelor enters into clinical use for acute coronary syndrome, it is important to understand patient/physician behavior in terms of appropriate use, adherence, and event rates. Methods The Southern Saskatchewan Ticagrelor Registry is a prospective, observational, multicenter cohort study that identifies consecutive patients started on ticagrelor. We aimed to evaluate both on- and off-label use, identify characteristics of patients who prematurely stop ticagrelor, and describe patient/physician behavior contributing to inappropriate stoppage of this medication. Results From April 2012 to September 2013, 227 patients were initiated on ticagrelor, with a mean age of 62.2±12.1 years. The participants were 66% men and had a mean follow up of 157.4±111.7 days. Seventy-four patients (32.4%) had off-label indications. Forty-seven patients (20.7%) prematurely stopped ticagrelor and were more likely to be older, women, nonwhite, present with shock, and complain of dyspnea. Twenty-six of the 47 patients stopped ticagrelor inappropriately because of patient nonadherence (18 patients) and physician advice (eight patients). A composite outcome event of death from vascular causes, myocardial infarction, or stroke occurred in 8.8% of the entire cohort and was more likely to occur in those older then 65 years, those presenting with cardiogenic shock, and those who prematurely stopped ticagrelor. Conclusion In this real-world registry of patients started on ticagrelor, a third have off-label indications and a fifth prematurely stop the medication. Premature discontinuation was an independent predictor of major life-threatening bleeding and increased composite event rate of death from vascular causes, myocardial infarction, or stroke. PMID:25342889

  16. Regulatory Insight into the European Human Pluripotent Stem Cell Registry

    PubMed Central

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

    2014-01-01

    Abstract 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

  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. 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 ...

  19. 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.

  20. Are Cancer Registries Unconstitutional?

    PubMed Central

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

    2010-01-01

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

  1. The PLDD registry.

    PubMed

    Chambers, R A; Botsford, J A; Fanelli, E

    1995-06-01

    The rapid acceptance of minimally invasive surgery in the United States has largely occurred without statistical proof of its superiority over traditional methods. All players in the healthcare field now see the need for valid outcome studies supporting the efficacy of new treatment techniques. Percutaneous laser disc decompression (PLDD) will gain wide acceptance only if it is statistically shown to be a safe and effective alternative treatment of a lumbar disc herniation. To that end, a central PLDD registry has been developed and implemented into clinical practice at several centers. This article reviews healthcare trends that motivated the creation of this data repository and discusses the history of its development. The currently used PLDD evaluation form is outlined and its utility is discussed. Most importantly, preliminary PLDD results and complications based on the data received are presented and analyzed. PMID:10150649

  2. Pulmonary embolism: Epidemiology and registries.

    PubMed

    Monreal, Manuel; Mahé, Isabelle; Bura-Riviere, Alessandra; Prandoni, Paolo; Verhamme, Peter; Brenner, Benjamin; Wells, Phil S; Di Micco, Pierpaolo; Bertoletti, Laurent

    2015-12-01

    Real-life data is important in understanding the needs of patients in routine clinical practice, particularly owing to the fact that almost a quarter of patients with venous thromoboembolism (VTE) have at least one exclusion criterion preventing their recruitment into randomized clinical trials. The Registro Informatizado de Enfermedad Trombo Embólica (RIETE) registry is an ongoing, international, multicentre, prospective registry of consecutive patients presenting with acute VTE. In this chapter, we summarized some of the most relevant data concerning the epidemiology of VTE in the RIETE registry. PMID:26547675

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

    PubMed Central

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

    2016-01-01

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

  4. 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. PMID:25233118

  5. BioSWR – Semantic Web Services Registry for Bioinformatics

    PubMed Central

    Repchevsky, Dmitry; Gelpi, Josep Ll.

    2014-01-01

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

  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. 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

  8. Worldwide variability in deceased organ donation registries.

    PubMed

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

    2012-08-01

    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

  9. 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.

  10. 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 ...

  11. 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

  12. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

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

  13. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

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

  14. 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...

  15. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

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

  16. 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...

  17. 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

  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. 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.

  20. Client interfaces to the Virtual Observatory Registry

    NASA Astrophysics Data System (ADS)

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

    2015-04-01

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

  1. Data Standards in Diabetes Patient Registries

    PubMed Central

    Richesson, Rachel L

    2011-01-01

    Widespread adoption of electronic health records (EHRs) and expansion of patient registries present opportunities to improve patient care and population health and advance translational research. However, optimal integration of patient registries with EHR functions and aggregation of regional registries to support national or global analyses will require the use of standards. Currently, there are no standards for patient registries and no content standards for health care data collection or clinical research, including diabetes research. Data standards can facilitate new registry development by supporting reuse of well-defined data elements and data collection systems, and they can enable data aggregation for future research and discovery. This article introduces standardization topics relevant to diabetes patient registries, addresses issues related to the quality and use of registries and their integration with primary EHR data collection systems, and proposes strategies for implementation of data standards in diabetes research and management. PMID:21722563

  2. Race and Residential Socioeconomics as Predictors of CPAP Adherence

    PubMed Central

    Billings, Martha E.; Auckley, Dennis; Benca, Ruth; Foldvary-Schaefer, Nancy; Iber, Conrad; Redline, Susan; Rosen, Carol L.; Zee, Phyllis; Kapur, Vishesh K.

    2011-01-01

    Study Objectives: There are few established predictors of CPAP adherence; poor adherence limits its effectiveness. We investigated whether race, education level, and residential economic status predict CPAP adherence in participants enrolled in a trial with standard access to treatment. Design: A multi-center randomized trial of home vs. lab-based evaluation and treatment of OSA assessing adherence to CPAP at 1 and 3 months. Setting: Seven AASM-accredited sleep centers in 5 U.S. cities. Participants: Subjects with moderate to severe OSA (AHI ≥ 15 and Epworth Sleepiness Scale score > 12) who completed follow-up at 1 and/or 3 months (n = 135). Measurements and Results: Subjects' demographic data were collected upon enrollment; CPAP use at 1 and 3 months was assessed at clinic follow-up. In unadjusted analyses, CPAP adherence (average minutes per night of CPAP use) at 3 months was lower in black subjects and in subjects from lower socioeconomic status ZIP codes. In adjusted analyses using multivariate linear regression, black race was predictive of CPAP adherence at one month (P = 0.03). At 3 months, black race was predictive in analyses only when ZIP code SES was not adjusted for. Conclusion: Black race and lower socioeconomic residential areas are associated with poorer adherence to CPAP in subjects with standardized access to care and treatment. Disparities remain despite provision of standardized care in a clinical trial setting. Future research is needed to identify barriers to adherence and to develop interventions tailored to improve CPAP adherence in at risk populations. Portable Monitoring for Diagnosis and Management of Sleep Apnea (HomePAP) Clinical Trial Information: NIH clinical trials registry number: NCT00642486. URL: http://clinicaltrials.gov/show/NCT00642486. Citation: Billings ME; Auckley D; Benca R; Foldvary-Schaefer N; Iber C; Redline S; Rosen CL; Zee P; Kapur VK. Race and residential socioeconomics as predictors of CPAP adherence. SLEEP 2011

  3. 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

  4. 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.

  5. Iranian Pulmonary Arterial Hypertension Registry

    PubMed Central

    Fahimi, Fanak; Sharif-Kashani, Babak; Malek Mohammad, Majid; Saliminejad, Leila; Monjazebi, Fateme

    2015-01-01

    Background: Idiopathic pulmonary arterial hypertension (IPAH) is a fatal disorder with a prevalence of 8.6 per million. We introduce a registry website for IPAH and PAH patients ( www.IPAH.ir) for access and efficient delivery of government-aided and subsidized antihypertensive medications. Materials and Methods: The IPAH registry was opened in November 2009. Information of IPAH and PAH patients with a username and password were uploaded in the site. Data entry was possible only via the physicians and healthcare organizations via internet that were given a personalized username and password for entry. Following the patients’ profile submission, a scientific committee composed of a cardiologist and a pulmonologist who were selected by the Ministry of Health of Iran (MOH), evaluated the data. The eligibility of the patient to receive the medications was confirmed after evaluation. If the patient was eligible, 82% of the Bosentan cost was paid by MOH. Results: To date, one hundred and sixteen patients (82 females, 34 males) have been registered. The mean pulmonary artery pressure by right heart catheterization was 69.24±17 mmHg (ranging from 35 to 110 mmHg). Conclusion: The first online Iranian registry program for IPAH and PAH patients is believed to supply essential information for health care providers in the field. PMID:26528365

  6. World apheresis association--world apheresis registry.

    PubMed

    Stegmayr, B G; Ivanovich, P; Korach, J M; Rock, G; Norda, R; Ramlow, W

    2005-04-01

    In 2002 WAA decided to start a world-wide apheresis registry to gain insight into the extent of treatment, adverse events, and to facilitate contacts among centers when treatment indications are rare and experience limited. Stem cell and other blood products collections intended for therapeutic application can also be entered. The WAA planned to use the French Registry. Its translation into English has not been accomplished and the fiscal obligations for that registry has not, as yet, been determined or considered and approved by the WAA Board. From Dec 2002 the proposed registry (a merged version of the French, Canadian and Swedish registries) can be immediately implemented. We now cordially invite all centers to join that registry. Please, also inform colleagues at other centers in your country to join. E-mail and address lists of colleagues in your country who have not registered will be welcomed. The site is at: Go to World Apheresis Registry; Login code to test the Registry is: al61tms. Then apply for a specific login code for your center. We welcome you to this registry for your input of data. You will not be charged any registration fee. The registry includes a randomization system that can be used for local or multi center studies (randomization by in-center basis allows you to make your own studies). It includes a formula that increases the chance to get a more even distribution between groups also for smaller sample sizes. PMID:15784455

  7. 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.

  8. Enhancing adherence through education.

    PubMed

    Smrtka, Jennifer; Caon, Christina; Saunders, Carol; Becker, Brenda L; Baxter, Nancy

    2010-10-01

    The treatment of multiple sclerosis (MS) has advanced greatly since the introduction of disease-modifying therapies (DMTs) in the early 1990s. Although the DMTs have exhibited significant efficacy in relapsing-remitting MS and other forms of the disease, the degree of benefit depends heavily on patient adherence to recommended regimens. This article addresses some of the most pressing areas of unmet need in educating advanced-practice nurses, neurologists, patients, and support care partners regarding strategies that can overcome obstacles to adherence. The observations presented here are based on clinical experience with real-life cognitive, psychosocial, and cultural impediments to adherence. The article also explores the ways in which adherence may be affected by emerging therapies for MS (such as oral agents) as well as the educational needs that will arise with the further evolution of MS care. PMID:21049830

  9. 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

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

    SciTech Connect

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

    2015-01-01

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

  11. Multicenter Breast Cancer Collaborative Registry

    PubMed Central

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

    2011-01-01

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

  12. Multicenter breast cancer collaborative registry.

    PubMed

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

    2011-01-01

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

  13. 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...

  14. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

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

  15. 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...

  16. United States Transuranium and Uranium Registries

    SciTech Connect

    Kathren, R.

    1993-02-28

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

  17. 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

  18. 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

  19. Clinical disease registries in acute myocardial infarction

    PubMed Central

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

    2014-01-01

    Disease registries, containing systematic records of cases, have for nearly 100 years been valuable in exploring and understanding various aspects of cardiology. This is particularly true for myocardial infarction, where such registries have provided both epidemiological and clinical information that was not readily available from randomised controlled trials in highly-selected populations. Registries, whether mandated or voluntary, prospective or retrospective in their analysis, have at their core a common study population and common data definitions. In this review we highlight how registries have diversified to offer information on epidemiology, risk modelling, quality assurance/improvement and original research-through data mining, transnational comparisons and the facilitation of enrolment in, and follow-up during registry-based randomised clinical trials. PMID:24976913

  20. Central registry in psychiatry: A structured review

    PubMed Central

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

    2014-01-01

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

  1. 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

  2. The Italian National Rare Diseases Registry

    PubMed Central

    Taruscio, Domenica; Kodra, Yllka; Ferrari, Gianluca; Vittozzi, Luciano

    2014-01-01

    Introduction Rare disease registries are a priority at European level and specific actions are being implemented by the European Commission to support their development. In Italy, a National Registry of rare diseases has been established in 2001 as a network of regional registries. The latter have gradually been established and the full coverage of the Italian territory was attained during 2011. Methods Here we describe the basic features of the National Registry of rare diseases; the activities carried out to promote consistent operations in the regional registries; and the overall quality and composition of the records collected. Results After a validation process, including removal of duplicate records, 110,841 records of patients with rare diseases, single and with group denominations, are stored in the National Registry of rare diseases. They correspond to the overall diagnoses communicated to national registry by regional registries up to 30 June 2012. The quality of the data collected by the the National Registry of rare diseases has been assessed with respect to completeness and consistency of procedures. Variables characterising case and diagnosis showed a very limited number of missing values. Records reported at least one case of 485 rare conditions. Discussion To date, the National Registry of rare diseases is a surveillance system with the main objective of producing epidemiologic evidence on rare diseases in Italy, and of supporting policy making and health services planning. Data quality still represents a limitation for any sound epidemiological estimate of rare diseases in Italy. However, improvements of the quality of collected data and the completeness of case notifications should be strengthened. PMID:24922301

  3. 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

  4. 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.

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

    NASA Astrophysics Data System (ADS)

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

    2016-01-01

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

  6. 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

  7. [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

  8. Agency for Toxic Substances and Disease Registry

    MedlinePlus

    ... Mandate Congressional Testimony Board of Scientific Counselors Regional Offices Program Overview ATSDR en Español A-Z Index Multimedia Tools Special Initiatives Publications Sites Toxic Substances Health Registries ...

  9. [Taxonomy and definition of clinical registries].

    PubMed

    Costa, Giuseppe

    2015-09-01

    In order to assess the needs of knowledge about surveillance and registries in Italy and to prepare a proposal for the advancement of monitoring and recording capacity, a working group led by the Italian Association of Epidemiology and composed by the University of Turin, the Institute of Health and Agenas, carried out a survey of definitions and approaches used in public health and consulted the main Italian experts in surveillance and registries. Some of the reflections developed in this project are presented, to assess to which extent they are adaptable to the prospects the program PRIER aims to. Different aspects of the issue are analyzed: from the frame work necessary to identify information needs and how to improve the ability to measure and types of definitions and taxonomies of the registers, to the implications of the choices about what to include in registries on regulation of the instruments and investment priorities for new registries and surveillance. PMID:26418503

  10. 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...

  11. 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...

  12. 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...

  13. 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...

  14. 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...

  15. 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...

  16. 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...

  17. 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. PMID:26438630

  18. A WHITE LIGHT MEGAFLARE ON THE dM4.5e STAR YZ CMi

    SciTech Connect

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

    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 A 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 A to 4800 A 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{approx} 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 ({approx}3-16 times) larger. These data will provide critical constraints for understanding the physics underlying the mysterious blue continuum radiation in stellar flares.

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

    NASA Astrophysics Data System (ADS)

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

    2015-01-01

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

  20. 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

  1. 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

  2. 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

  3. Reconceptualizing medication adherence: six phases of dynamic adherence.

    PubMed

    Gearing, Robin E; Townsend, Lisa; MacKenzie, Michael; Charach, Alice

    2011-01-01

    Nonadherence is the Achilles' heel of effective psychiatric treatment. It affects the resolution of mental health symptoms and interferes with the assessment of treatment response. The meaning of the term adherence has evolved over time and is now associated with a variety of definitions and measurement methods. The result has been a poorly operationalized and nonstandardized term that is often interpreted differently by providers and patients. Drawing extensively from the literature, this article aims to (1) describe changes in the concept of adherence, drawing from the mental health treatment literature, (2) present a more comprehensive definition of adherence that recognizes the role of patient-provider transactions, (3) introduce dynamic adherence, a six-phase model, which incorporates the role of transactional processes and other factors that influence patients' adherence decisions, and (4) provide recommendations for providers to improve adherence as well as their relationships with patients. PMID:21790266

  4. 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.

  5. 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

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

    NASA Astrophysics Data System (ADS)

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

    2009-12-01

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

  7. [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

  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. 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.

  10. A registry of ankylosing spondylitis registries and prospects for global interfacing

    PubMed Central

    Reveille, John D.

    2013-01-01

    Purpose of review To review the optimal criteria and conditions for establishing a clinical registry, as well as detailing their application in a number of ankylosing spondylitis (AS) and axial spondyloarthritis (axSpA) Registries already in existence. Recent findings Recent genetic studies and studies of long-term treatment efficacy and side-effects have underscored the need for large numbers of patients, much larger than would be possible from a single center or consortium. An optimal Registry should have its aims established upfront, with appropriate governance and oversight, and inclusion and exclusion criteria for participating collaborators and subject defined. Collaborators contributing subjects to a Registry should use validated instruments for which they have been previously trained. The numerous cross-sectional and longitudinal Registries on AS and axSpA have been recently established that differ widely depending on the referral and selection issues. Summary The challenge of large-scale examinations of genetics, comorbidities, medication usage, and side-effects in spondyloarthritis underscores the need for combining data from well characterized registries of AS patients which require careful planning. There are currently many such registries available internationally, offering promise for collaborations and data pooling that can answer some of the pressing questions facing rheumatology clinicians and researchers. PMID:23656716

  11. Barriers to and facilitative processes of endocrine therapy adherence among women with breast cancer.

    PubMed

    Bright, Emma E; Petrie, Keith J; Partridge, Ann H; Stanton, Annette L

    2016-07-01

    The treatment of chronic illness, and the prevention of disease progression and recurrence, often involve long-term adherence to prescription medications in breast cancer. Despite the survival benefit of endocrine therapies, nonadherence remains high. In this study, we examined barriers to and facilitators of endocrine therapy adherence among women with breast cancer (n = 1371). Participants currently taking tamoxifen or aromatase inhibitors were recruited from Dr. Susan Love Research Foundation's Army of Women(®) Registry. Participants responded online to open-ended and close-ended questions about thoughts, feelings, and behaviors relevant to endocrine therapy. Two weeks later, women were invited to complete a second online questionnaire regarding current endocrine therapy adherence. Approximately one-third (36 %) of participants reported the presence of factors that make endocrine therapy difficult; reporting any barrier to medication adherence was significantly associated with nonadherence (P < 0.001). In addition, 31 % of women used one or more strategies to maintain their motivation to adhere and the use of cognitive self-talk (e.g., thoughts regarding endocrine therapy efficacy) was related to higher adherence. Hierarchical linear regressions revealed a significant behavioral barrier × behavioral facilitator interaction (P < 0.05); participants who endorsed a behavioral barrier in the absence of a behavioral facilitator reported the lowest adherence. Findings suggest that a sizeable minority of women face barriers to taking endocrine therapy, which are associated with nonadherence. PMID:27342455

  12. [Adherence to psychopharmacological treatment: Psychotherapeutic strategies to enhance adherence].

    PubMed

    Lencer, R; Korn, D

    2015-05-01

    Effective psychopharmacological medication with good tolerability represents the cornerstone of treatment for severe mental illness; however, the 1-year adherence rates are only approximately 50%. The term adherence emphasizes the collaborative responsibility of the clinician and the patient for a positive treatment outcome. Reasons for non-adherence are manifold and include patient-specific factors, such as self-stigmatization, lack of social and familial support, cognitive impairment and substance use besides insufficient effectiveness and the occurrence of side effects of the psychotropic drugs. To enhance adherence, both clinician and patient have to fully understand all the reasons for and against adherence to medication before a collaborative decision is made on future long-term treatment. A positive attitude towards medication critically depends on whether patients feel that the medication supports the attainment of the individual goals. PMID:25903501

  13. 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

  14. 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

  15. 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

  16. Improved adherence with contingency management.

    PubMed

    Rosen, Marc I; Dieckhaus, Kevin; McMahon, Thomas J; Valdes, Barbara; Petry, Nancy M; Cramer, Joyce; Rounsaville, Bruce

    2007-01-01

    Contingency management (CM) based interventions that reinforce adherence to prescribed medications have shown promise in a variety of disadvantaged populations. Fifty-six participants with histories of illicit substance use who were prescribed antiretroviral medication but evidenced suboptimal adherence during a baseline assessment were randomly assigned to 16 weeks of weekly CM-based counseling or supportive counseling, followed by 16 additional weeks of data collection and adherence feedback to providers. The CM intervention involved review of data generated by electronic pill-bottle caps that record bottle opening (MEMS) and brief substance abuse counseling. CM participants were reinforced for MEMS-measured adherence with drawings from a bowl for prizes and bonus drawings for consecutive weeks of perfect adherence. Potential total earnings averaged $800. Mean MEMS-measured adherence to the reinforced medication increased from 61% at baseline to 76% during the 16-week treatment phase and was significantly increased relative to the supportive counseling group (p = 0.01). Furthermore, mean log-transformed viral load was significantly lower in the CM group. However, by the end of the 16-week follow-up phase, differences between groups in adherence and viral load were no longer significantly different. Proportions of positive urine toxicology tests did not differ significantly between the two groups at any phase. A brief CM-based intervention was associated with significantly higher adherence and lower viral loads. Future studies should evaluate methods to extend effects for longer term benefits. PMID:17263651

  17. Optimizing adherence to antiretroviral therapy

    PubMed Central

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

    2011-01-01

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

  18. [Treatment adherence: a key element].

    PubMed

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

    2011-12-01

    A substantial percentage of patients fail to follow health professionals' recommendations, which affects the management of chronic diseases, reducing the effectiveness of therapeutic interventions and increasing the costs of the disease. Lack of adherence is a multidimensional phenomenon and is influenced by numerous factors that should be identified. A multiplicity of measures is available to improve adherence, such as simplifying treatment administration, but none of these measures is effective when used alone. One way of tackling lack of adherence is by identifying patients' barriers to medication and involving them in decision making. Ulcerative colitis (UC) poses a risk for lack of treatment adherence. In this disease, poor adherence correlates with poor disease control (drug effectiveness) and with higher costs. As in other chronic diseases, the causes associated with poor adherence are multiple, including psychosocial factors, the physician-patient relationship and patients' prejudices toward medication. A single dose of aminosalycylates (5-ASA) should be recommended, as this dose is as safe and effective as other regimens. However, by itself, this recommendation does not seem to improve adherence. Identifying the scale of the problem and developing strategies to involve the patient in decision making is crucial to improve treatment adherence. PMID:25443221

  19. Antidepressant adherence after psychiatric hospitalization

    PubMed Central

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

    2010-01-01

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

  20. 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…

  1. NATIONAL CONGENITAL RUBELLA SYNDROME REGISTRY (NCRSR)

    EPA Science Inventory

    The system compiles information on all U.S. congenital rubella syndrome cases. The registry includes cases reported to CDC since 1969. Information collected includes demographic data, laboratory results, and disease symptoms. These data are used to calculate incidence rates and o...

  2. [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

  3. [The Austrian Stroke-Unit-Registry].

    PubMed

    Hofer, Christine; Kiechl, Stefan; Lang, Wilfried

    2008-01-01

    Since 2003 the Austrian Stroke-Unit-Registry has been administered by the Gesundheit Osterreich GmbH. A total of 26 out of the 32 existing Stroke Units in Austria take part in the project, financed by the Federal Ministry of Health and accompanied by a steering group. This paper provides a description of the objectives, organisation, methodology and the data set of the registry. The main objective of the registry is quality assurance and quality improvement of stroke-treatment in stroke units. Therefore, the participating stroke units document their cases using a web-based database. The data are discussed in the steering group and the stroke units get feedback in terms of benchmarking-graphs. The data set follows a modular approach and contains information about stroke, transport, admission to the hospital, stroke unit discharge and the 3-month follow-up. Between 2003 and 2007 about 27,000 cases (containing about 20,000 strokes) were documented in the registry. PMID:18766309

  4. 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...

  5. 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

  6. 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...

  7. 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...

  8. 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...

  9. 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...

  10. Targeted Development of Registries of Biological Parts

    PubMed Central

    Peccoud, Jean; Blauvelt, Megan F.; Cai, Yizhi; Cooper, Kristal L.; Crasta, Oswald; DeLalla, Emily C.; Evans, Clive; Folkerts, Otto; Lyons, Blair M.; Mane, Shrinivasrao P.; Shelton, Rebecca; Sweede, Matthew A.; Waldon, Sally A.

    2008-01-01

    Background The design and construction of novel biological systems by combining basic building blocks represents a dominant paradigm in synthetic biology. Creating and maintaining a database of these building blocks is a way to streamline the fabrication of complex constructs. The Registry of Standard Biological Parts (Registry) is the most advanced implementation of this idea. Methods/Principal Findings By analyzing inclusion relationships between the sequences of the Registry entries, we build a network that can be related to the Registry abstraction hierarchy. The distribution of entry reuse and complexity was extracted from this network. The collection of clones associated with the database entries was also analyzed. The plasmid inserts were amplified and sequenced. The sequences of 162 inserts could be confirmed experimentally but unexpected discrepancies have also been identified. Conclusions/Significance Organizational guidelines are proposed to help design and manage this new type of scientific resources. In particular, it appears necessary to compare the cost of ensuring the integrity of database entries and associated biological samples with their value to the users. The initial strategy that permits including any combination of parts irrespective of its potential value leads to an exponential and economically unsustainable growth that may be detrimental to the quality and long-term value of the resource to its users. PMID:18628824

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

    PubMed Central

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

    2015-01-01

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

  12. 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.,...

  13. 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.,...

  14. 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.,...

  15. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 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., the... 19 Customs Duties 1 2011-04-01 2011-04-01 false Aircraft of foreign registry. 122.54 Section...

  16. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

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

  17. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

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

  18. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

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

  19. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

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

  20. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

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

  1. 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...

  2. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... order posted on the Electronic Job Registry until the end of 50 percent of the contract period as set... 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...

  3. 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.,...

  4. Using a registry to improve immunization delivery.

    PubMed

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

    2006-07-01

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

  5. Clustering based on adherence data

    PubMed Central

    2011-01-01

    Adherence to a medical treatment means the extent to which a patient follows the instructions or recommendations by health professionals. There are direct and indirect ways to measure adherence which have been used for clinical management and research. Typically adherence measures are monitored over a long follow-up or treatment period, and some measurements may be missing due to death or other reasons. A natural question then is how to describe adherence behavior over the whole period in a simple way. In the literature, measurements over a period are usually combined just by using averages like percentages of compliant days or percentages of doses taken. In the paper we adapt an approach where patient adherence measures are seen as a stochastic process. Repeated measures are then analyzed as a Markov chain with finite number of states rather than as independent and identically distributed observations, and the transition probabilities between the states are assumed to fully describe the behavior of a patient. The patients can then be clustered or classified using their estimated transition probabilities. These natural clusters can be used to describe the adherence of the patients, to find predictors for adherence, and to predict the future events. The new approach is illustrated and shown to be useful with a simple analysis of a data set from the DART (Development of AntiRetroviral Therapy in Africa) trial in Uganda and Zimbabwe. PMID:21385451

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

    NASA Astrophysics Data System (ADS)

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

    2015-06-01

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

  7. 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

  8. 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.

  9. 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

  10. 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

  11. An international registry for primary ciliary dyskinesia.

    PubMed

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

    2016-03-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course.To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. PMID:26659107

  12. 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

  13. 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

  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. 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

  16. The challenge of patient adherence.

    PubMed

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

    2005-09-01

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

  17. Understanding Orthopaedic Registry Studies: A Comparison with Clinical Studies.

    PubMed

    Inacio, Maria C S; Paxton, Elizabeth W; Dillon, Mark T

    2016-01-01

    Orthopaedic registries are valuable for monitoring patient outcomes in real-world settings. Registries are useful for identifying procedure incidence and device utilization, evaluating outcomes, determining patients at risk for complications and reoperations, identifying devices in recall situations, assessing comparative effectiveness of procedures and devices, and providing data for research studies. In the present report, we describe how orthopaedic registries can be used to conduct research and how they compare with randomized controlled trials (RCTs) in regard to methodology. Using an example, a comparison of the performance of mobile and fixed bearings in total knee arthroplasty, we evaluate the differences between, and the similarities of, RCTs and registry cohort studies with regard to how they are conducted and how their findings are reported. Orthopaedic registry studies differ from RCTs in many ways and offer certain advantages. The strengths and limitations of registry cohort studies and RCTs must be understood to properly evaluate the literature. PMID:26738910

  18. [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

  19. 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

  20. Adherence of sputtered titanium carbides

    NASA Technical Reports Server (NTRS)

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

    1979-01-01

    Sputtered coatings of the refractory metal carbides are of great interest for applications where hard wear-resistant materials are desired. The usefulness of sputtered refractory carbides is often limited, in practice, by spalling or interfacial separation. In this work improvements in the adherence of refractory carbides on iron, nickel and titanium based alloys were obtained by using oxidation, reactive sputtering or sputtered interlayers to alter the coating-substrate interfacial region. X-ray photoelectron spectroscopy and argon ion etching were used to characterize the interfacial regions, and an attempt was made to correlate adherence as measured in wear tests with the chemical nature of the interface.

  1. 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

  2. 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

  3. 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

  4. 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

  5. Patient reported outcomes in hip arthroplasty registries.

    PubMed

    Paulsen, Aksel

    2014-05-01

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

  6. 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

  7. 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

  8. 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. PMID:25730182

  9. 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

  10. Evaluating adherence to the International Committee of Medical Journal Editors’ policy of mandatory, timely clinical trial registration

    PubMed Central

    Huser, Vojtech; Cimino, James J

    2013-01-01

    Objective To determine whether two specific criteria in Uniform Requirements for Manuscripts (URM) created by the International Committee of Medical Journal Editors (ICMJE)—namely, including the trial ID registration within manuscripts and timely registration of trials, are being followed. Materials and methods Observational study using computerized analysis of publicly available Medline article data and clinical trial registry data. We analyzed a purposive set of five ICMJE founding journals looking at all trial articles published in those journals during 2010–2011, and data from the ClinicalTrials.gov (CTG) trial registry. We measured adherence to trial ID inclusion policy as the percentage of trial journal articles that contained a valid trial ID within the article (journal-based sample). Adherence to timely registration was measured as the percentage of trials that registered the trial before enrolling the first participant within a 60-day grace period. We also examined timely registration rates by year of all phase II and higher interventional trials in CTG (registry-based sample). Results To determine trial ID inclusion, we analyzed 698 clinical trial articles in five journals. A total of 95.8% (661/690) of trial journal articles included the trial ID. In 88.3% the trial-article link is stored within a structured Medline field. To evaluate timely registration, we analyzed trials referenced by 451 articles from the selected five journals. A total of 60% (272/451) of articles were registered in a timely manner with an improving trend for trials initiated in later years (eg, 89% of trials that began in 2008 were registered in a timely manner). In the registry-based sample, the timely registration rates ranged from 56% for trials registered in 2006 to 72% for trials registered in 2011. Discussion Adherence to URM requirements for registration and trial ID inclusion increases the utility of PubMed and links it in an important way to clinical trial repositories

  11. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

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

  12. 14 CFR 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. 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...

  14. 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... Register published on January 17, 2008 (73 FR 3316) at...

  15. 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..., a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post...

  16. 76 FR 14366 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-16

    ... National Registry of Certified Medical Examiners (NRCME) published on December 1, 2008 (73 FR 73129). Other... Federal Register (73 FR 3316). Title: National Registry of Certified Medical Examiners (NRCME). Summary... 73 FR at 73140-42). Public Participation and Request for Comments: We encourage you to...

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

    ERIC Educational Resources Information Center

    Tewksbury, Richard; Lees, Matthew B.

    2007-01-01

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

  18. 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…

  19. 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...

  20. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 29 Labor 3 2010-07-01 2010-07-01 false Establishment of registry. 500.170 Section 500.170 Labor Regulations Relating to Labor (Continued) WAGE AND HOUR DIVISION, DEPARTMENT OF LABOR REGULATIONS MIGRANT AND SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment...

  1. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 29 Labor 3 2011-07-01 2011-07-01 false Establishment of registry. 500.170 Section 500.170 Labor Regulations Relating to Labor (Continued) WAGE AND HOUR DIVISION, DEPARTMENT OF LABOR REGULATIONS MIGRANT AND SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment...

  2. 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...

  3. 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...

  4. United States Transuranium and Uranium Registries. Annual report

    SciTech Connect

    Kathren, R.

    1993-02-28

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

  5. The 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

  6. [The IRIS® Registry : Purpose and perspectives. German Version].

    PubMed

    Parke Ii, D W; Lum, F; Rich, W L

    2016-06-01

    The American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) launched about 2 years ago and has already become the largest national clinical specialty data registry with nearly 50 million patient visits and over 14 million unique patients. The purpose of the registry is to support and promote continued improvement in the delivery of eye care. The perspectives that "big data" encompass are the key issues facing ophthalmology and eye care, including public health and public policy concerning disease incidence and prevalence, utilization of eye care services, natural history of disease, disease surveillance, comparative effectiveness, safety and adverse event monitoring, compliance with "best practices" and clinical guidelines, etc. The valuable real-world and current-day insights provided by the IRIS Registry and other registries like it will accelerate scientific learning and improvements in care delivery, particularly in a cost-constrained environment. PMID:27277752

  7. 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. PMID:26040703

  8. Factors influencing human leukocyte adherence in vitro.

    PubMed

    Stepniewicz, W; Tchórzewski, H; Luciak, M

    1983-01-01

    Studies were performed on factors influencing leucocyte adherence in vitro. Blood condensation was found to increase leukocyte adherence. Addition of heparin, dextran or ethanol caused a significant reduction of white blood cell count in blood samples in comparison with blood mixed with sodium EDTA or ACD solution. This suggests the existence of two granulocyte subpopulations; viz, rapidly adhering and slowly adhering. Heparin enhanced granulocyte adherence, while dextran and ethanol decreased it. Five-day storage of ACD blood led to a decrease in granulocyte adherence, while addition of heparin or histamine to ACD blood prevented this change to occur. The glucose concentration of 1,000 mg/dl augmented granulocyte adherence, while higher glucose concentrations induced its progressive fall below the control values. There was no significant change of lymphocyte adherence during the experiments. PMID:6194070

  9. 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

  10. 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

  11. 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…

  12. The National Exposure Registry: procedures for establishing a registry of persons environmentally exposed to hazardous substances.

    PubMed

    Burg, J R; Gist, G L

    1995-01-01

    The Agency for Toxic Substances and Disease Registry has, as mandated in Superfund legislation, established the National Exposure Registry (NER). The purpose of the NER is to assess and evaluate the potential relationship between adverse health effects and environmental exposure for an exposed population, particularly the relationship between chronic health effects and long-term, low-level chemical exposures. The NER's primary goal is to facilitate epidemiology research by establishing multiple data bases (subregistries) that contain demographic, environmental, and health information on large populations exposed to selected chemicals. The Registry data mainly serve the purpose of being hypothesis-generating rather than hypothesis-testing. The NER is currently composed of subregistries of: (1) persons exposed to volatile organic compounds (VOCs)--a subset of registrants in whom trichloroethylene (TCE) is the primary VOC exposure, but others are present (N = 4,832), a subset in whom benzene is the primary VOC exposure (N = 1,142), and a subset in whom trichloroethane (TCA) and TCE are the highest VOC exposures (N = 3,666); and (2) persons with dioxin exposure (N = 250). Chromium and radioactive substances subregistries are planned. PMID:7491637

  13. 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

  14. How can we improve adherence?

    PubMed

    Price, Patricia

    2016-01-01

    Many patients with wound healing difficulties are also coping with the management of a chronic disease or chronic condition that requires them to make lifestyle behaviour changes, for example, managing glucose levels through diet and exercise and regular foot inspection. Many find it difficult to make such changes and often experience feelings of powerlessness when faced with a lifetime of behavioural and psychological change. This article will explore the importance of understanding the patient difficulties associated with adherence to a regime and how life changes can be difficult to maintain over sustained periods of time. However, the article will also discuss the importance of this topic in trying to understand the clinical evidence base for treatment--as many clinical trials investigating treatments for the diabetic foot do not include information on the extent to which patients in the trial conformed to the trial protocol. The article gives an overview of recent developments--including lessons we can learn from other chronic conditions where permanent life changes are required--in particular the need to keep health messages simple, tailored to the individual and repeated frequently. The evidence to date suggests that no one single form of adherence intervention will work with all patients; this is not surprising given complex and multifactorial nature of adherence and the myriad of barriers that exist that patients and health care professionals need to overcome. PMID:26453542

  15. 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

  16. Chapter 41: An Overview of the Registry Framework

    NASA Astrophysics Data System (ADS)

    Plante, R. L.; Greene, G.

    As we saw in its introduction in Chapter 7, a registry plays a key role in the discovery of data and services in the VO. Users can visit a registry portal, enter keywords or advanced query constraints to find and ultimately access a variety of data and services. Thus, we see that a registry is a kind of yellow pages for the VO that can even dial the number for you. In this chapter, we take a step back to understand exactly what a registry is, what it contains, and how it forms the basis for resource discovery. Despite its importance to the VO, a registry's destiny is to go largely unnoticed by most users, providing its services to other applications behind the scenes. Consequently, most who come to the VO as consumers do not need to understand most of the concepts presented in this chapter. Users that wish to employ advanced discovery techniques will benefit from a deeper understanding of the registry metadata model. Publishers - those who make data or services available to others through the VO - will also benefit from this closer look; not only will they see the role of registries in the publication process, they will better understand the importance of providing good descriptions of their assets so that users can make the most of them.

  17. 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

  18. [Long term adherence to HAART in Senegal].

    PubMed

    Bastard, M; Fall, M Basty Koita

    2014-10-01

    Adherence is one of the main predictors of antiretroviral treatment success. A governmental initiative was launched in 1998 for HIV-infected patients in Senegal to provide access to highly active antiretroviral therapy (HAART). Adherence measurements, defined as pills taken/pills prescribed, were assessed between November 1999 and June 2010 using a pill count along with a questionnaire for 330 patients. Predictors of adherence and identification of adherence trajectories were explored through latent class mixed model. We also performed a survival analysis using Cox proportional hazard model. Three adherence behaviours were revealed as well as a better adherence for women. A third of patients had a high adherence trajectory over time and a third had an intermediate one. Male gender and low adherence behaviour over time were independently associated with a higher mortality rate. This study shows that an overall good adherence can be obtained in the long term in Senegal, suggests a better adherence for women and points out a large subsample of patients with intermediate level of adherence behaviour who are at risk for developing resistance to antiretroviral drugs. PMID:24615434

  19. 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

  20. An international registry for neurodegeneration with brain iron accumulation

    PubMed Central

    2012-01-01

    We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7 – funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community. PMID:22985983

  1. 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

  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. PMID:26579661

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

    PubMed Central

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

    2015-01-01

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

  4. Medication Adherence in People With Parkinson Disease.

    PubMed

    Shin, Ju Young; Habermann, Barbara

    2016-01-01

    Parkinson disease (PD) is the second most common neurodegenerative disorder in the United States. Because there is no cure for PD currently, pharmacological therapy is the mainstay of PD symptom management. Despite the importance of medication adherence in PD, several studies have reported medication nonadherence and/or suboptimal adherence. This literature review provides an overview of medication adherence issues in people with PD. Articles were identified for this study using computerized database searches and journal hand searches. Of the 72 medication adherence articles reviewed, the following articles were eligible for this review: (a) 10 articles measuring medication adherence in people with PD, (b) four medication adherence intervention articles, and (c) six studies of medication adherence in hospitalized settings. The importance of adherence assessment and strategies in improving medication adherence are discussed with the goal of improving symptom management and clinical outcomes in people with PD. Because medication taking is a complex and multifaceted phenomena, patient-centered, theory-driven interventions are needed to improve medication adherence and quality of care and life in people with PD. PMID:27224682

  5. 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.

  6. 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

  7. Uses and limitations of registry and academic databases.

    PubMed

    Williams, William G

    2010-01-01

    A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. PMID:20307864

  8. Using Registries to Recruit Subjects for Clinical Trials

    PubMed Central

    Tan, Meng H; Thomas, Matthew; MacEachern, Mark P

    2015-01-01

    Aim We studied the use of patient/disease registries to recruit potential subjects for prospective clinical trials - describing the number, types and major benefits of using this approach. Methods In December 2013, we conducted a focused database search in PubMed, EMBASE, and Web of Science for studies (English language only) that used registries to recruit subjects for clinical trials published in 2004-2013. Of the 233 unique citations identified, 21 used registries to recruit subjects - 10 papers and 11 abstracts. Pearling and search for subsequent full papers of the abstracts identified 4 more papers. Results Our analysis, based on these 25 citations, showed 14 are related to cancer, 3 to diabetes mellitus, 1 each to stroke, asthma, and celiac disease and 5 are disease neutral. Many types of registries (population-based cancer, quality improvement, disease-specific, web-based disease-neutral registries, local general practice registers, and national health database) are used to recruit subjects for clinical trials and uncover new knowledge. Overall, 16 registries are in the US, 4 in UK, 1 each in Canada, Spain, Australia and I in many countries. Registries can identify very large number of subjects for screening for eligibility for clinical trials, especially in very large trials, rare disease trials, and trials involving minority patients. Conclusions Registries can retrospectively identify very large numbers of potential subjects for screening for eligibility and enrollment in prospective clinical trials. This matching can lead to more timely recruitment and help solve a major problem in conducting clinical trials. PMID:25545027

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

    PubMed

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

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required. PMID:25669198

  10. 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

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

    PubMed

    Neugebauer, E A M; Stausberg, J

    2016-06-01

    In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated. PMID:27169850

  12. 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.

  13. 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.

  14. Acute coronary syndrome registry from four large centres in United Arab Emirates (UAE-ACS Registry)

    PubMed Central

    Yusufali, Afzalhussein M; AlMahmeed, Wael; Tabatabai, Sadeq; Rao, Kabad; Binbrek, Azan

    2010-01-01

    Objective To identify the characteristics, treatments and hospital outcomes of patients diagnosed as having acute coronary syndrome (ACS) in the United Arab Emirates (UAE). Design A 3-year prospective registry. Setting Four tertiary care hospitals in three major cities of UAE from December 2003 to December 2006. Patients 1842 eligible consecutive patients with suspected ACS. Interventions None. Main outcome measures Characteristics, treatments and in-hospital outcomes were recorded. Results The mean age was 50.8±10.0 years, and 93.1% were male. More than half (51%) had ST elevation myocardial infarction (STEMI). The smoking rate was 46.4%, and diabetes was present in 38.9%. Only a minority (17.3%) used the ambulance services. For patients with STEMI, the median symptom to hospital time was 127 (IQR 60–256) min, and the median diagnostic ECG to thrombolysis time was 28 (IQR 16–50) min. Reperfusion in STEMI was in 81.4% (64.8% thrombolysis and 16.6% primary percutaneous coronary intervention). During hospitalisation, only a minority of the patients did not receive antiplatelets, anticoagulants, beta-blockers, ACE inhibitors and statin therapy. In-hospital complications were not common in our registry cohort. In-hospital mortality was 1.68%. Conclusions ACS patients in UAE are young but have higher risk factors such as smoking and diabetes. Almost half present as STEMI. Only a minority use ambulance services.

  15. 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

  16. Patient Characteristics Associated with Medication Adherence

    PubMed Central

    Rolnick, Sharon J; Pawloski, Pamala A.; Hedblom, Brita D.; Asche, Stephen E.; Bruzek, Richard J.

    2013-01-01

    Objective Despite evidence indicating therapeutic benefit for adhering to a prescribed regimen, many patients do not take their medications as prescribed. Non-adherence often leads to morbidity and to higher health care costs. The objective of the study was to assess patient characteristics associated with medication adherence across eight diseases. Design Retrospective data from a repository within an integrated health system was used to identify patients ≥18 years of age with ICD-9-CM codes for primary or secondary diagnoses for any of eight conditions (depression, hypertension, hyperlipidemia, diabetes, asthma or chronic obstructive pulmonary disease, multiple sclerosis, cancer, or osteoporosis). Electronic pharmacy data was then obtained for 128 medications used for treatment. Methods Medication possession ratios (MPR) were calculated for those with one condition and one drug (n=15,334) and then for the total population having any of the eight diseases (n=31,636). The proportion of patients adherent (MPR ≥80%) was summarized by patient and living-area (census) characteristics. Bivariate associations between drug adherence and patient characteristics (age, sex, race, education, and comorbidity) were tested using contingency tables and chi-square tests. Logistic regression analysis examined predictors of adherence from patient and living area characteristics. Results Medication adherence for those with one condition was higher in males, Caucasians, older patients, and those living in areas with higher education rates and higher income. In the total population, adherence increased with lower comorbidity and increased number of medications. Substantial variation in adherence was found by condition with the lowest adherence for diabetes (51%) and asthma (33%). Conclusions The expectation of high adherence due to a covered pharmacy benefit, and to enhanced medication access did not hold. Differences in medication adherence were found across condition and by

  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. PMID:25894119

  18. The Pediatric Cardiomyopathy Registry: 1995–2007

    PubMed Central

    Wilkinson, James D.; Sleeper, Lynn A.; Alvarez, Jorge A.; Bublik, Natalya; Lipshultz, Steven E.

    2008-01-01

    Cardiomyopathy is a serious disorder of the heart muscle and, although rare, it is potentially devastating in children. Funded by the National Heart Lung and Blood Institute since 1994, the Pediatric Cardiomyopathy Registry (PCMR) was designed to describe the epidemiology and clinical course of selected CMs in patients 18 years old or younger and to promote the development of etiology-specific prevention and treatment strategies. Currently, data from more than 3,000 children with cardiomyopathy have been entered in the PCMR database with annual follow-up continuing until death, heart transplant, or loss-to-follow up. Using PCMR data, the incidence of cardiomyopathy in two large regions of the United States is estimated to be 1.13 cases per 100,000 children. Only 1/3 of children had a known etiology at the time of cardiomyopathy diagnosis. Diagnosis was associated with certain patient characteristics, family history, echocardiographic findings, laboratory testing, and biopsy. Greater incidence was found in boys and infants (<1 yr) for both dilated and hypertrophic cardiomyopathy (DCM, HCM) and black race for only DCM. In DCM, prognosis is worse in older children (>1yr), heart failure (HF) at diagnosis or idiopathic etiology. For HCM, worse prognosis is associated with inborn errors of metabolism or combination of HCM and another cardiomyopathy functional type. The best outcomes were observed in children presenting at age >1 yr with idiopathic HCM. PCMR data have enabled analysis of patients with cardiomyopathy and muscular dystrophy, as well as Noonan Syndrome. Currently, collaborations with the Pediatric Heart Transplant Study group and a newly established Pediatric Cardiomyopathy Biologic Specimen Repository at Texas Children’s Hospital will continue to yield important results. The PCMR is the largest and most complete multi-center prospective data resource regarding the etiology, clinical course and outcomes for children with cardiomyopathy. PMID:19343086

  19. 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

  20. Medication adherence among adult patients on hemodialysis.

    PubMed

    Alkatheri, Abdulmalik M; Alyousif, Sarah M; Alshabanah, Najla; Albekairy, Abdulkareem M; Alharbi, Shemylan; Alhejaili, Fayze F; Alsayyari, Abdullah A; Qandil, Abeer Ma; Qandil, Amjad M

    2014-07-01

    Medication adherence was assessed in 89 patients on hemodialysis (HD) at the King Abdul Aziz Medical City using an Arabic version of the Morisky Medication Adherence Scale (MASS-8). The results of the study revealed that 31.46% and 40.45% of the participants showed low and medium adherence, respectively, while 28.09% showed high medication adherence. Accordingly, 71.91% of the patients visiting the dialysis unit were considered medication non-adherent. While being of older age (P = 0.012), being married (P = 0.012) increased the level of adherence, being of medium level of education (P = 0.024) decreased adherence levels. On the other hand, gender, presence of a care-giver, number of members in the household and employment status seems to have no effect on the level of medication adherence. These results call upon the practitioners in HD units to develop intervention programs that can increase the level of medication adherence. PMID:24969185

  1. Family interaction and treatment adherence after stroke.

    PubMed

    Evans, R L; Bishop, D S; Matlock, A L; Stranahan, S; Smith, G G; Halar, E M

    1987-08-01

    Caregivers of 60 stroke patients were assessed five months after patient discharge from a stroke care unit to determine the relationship between family function and poststroke treatment adherence. Areas of family interaction which were significantly related to ratings of treatment adherence included problem solving, communication, and affective involvement. Better functioning families were consistently high on signs of treatment adherence. Findings suggest that families with specific dysfunction may not be as capable of helping patients comply with rehabilitation efforts as families who function more effectively. Thorough family assessment to identify which areas of family interaction are most problematic in relation to adherence issues is recommended. PMID:3619615

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

    PubMed

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

    2012-12-01

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

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

    PubMed

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

    2015-12-01

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

  4. Improved 6-year overall survival in AT/RT - results of the registry study Rhabdoid 2007.

    PubMed

    Bartelheim, Kerstin; Nemes, Karolina; Seeringer, Angela; Kerl, Kornelius; Buechner, Jochen; Boos, Joachim; Graf, Norbert; Dürken, Matthias; Gerss, Joachim; Hasselblatt, Martin; Kortmann, Rolf-Dieter; Teichert von Luettichau, Irene; Nagel, Inga; Nygaard, Randi; Oyen, Florian; Quiroga, Eduardo; Schlegel, Paul-Gerhardt; Schmid, Irene; Schneppenheim, Reinhard; Siebert, Reiner; Solano-Paez, Palma; Timmermann, Beate; Warmuth-Metz, Monika; Frühwald, Michael Christoph

    2016-08-01

    Atypical teratoid rhabdoid tumors (AT/RT) are characterized by mutations and subsequent inactivation of SMARCB1 (INI1, hSNF5), a predilection for very young children and an unfavorable outcome. The European Registry for rhabdoid tumors (EU-RHAB) was established to generate a common European database and to establish a standardized treatment regimen as the basis for phase I/II trials. Thus, genetic analyses, neuropathologic and radiologic diagnoses, and a consensus treatment regimen were prospectively evaluated. From 2005 to 2009, 31 patients with AT/RT from four countries were recruited into the registry study Rhabdoid 2007 and treated with systemic and intraventricular chemotherapy. Eight patients received high-dose chemotherapy, 23 radiotherapy, and 17 maintenance therapy. Reference evaluations were performed in 64% (genetic analyses, FISH, MLPA, sequencing) up to 97% (neuropathology, INI1 stain). Germ-line mutations (GLM) were detected in 6/21 patients. Prolonged overall survival was associated with age above 3 years, radiotherapy and achievement of a complete remission. 6-year overall and event-free survival rates were 46% (±0.10) and 45% (±0.09), respectively. Serious adverse events and one treatment-related death due to insufficiency of a ventriculo peritoneal shunt (VP-shunt) and consecutive herniation were noted. Acquisition of standardized data including reference diagnosis and a standard treatment schedule improved data quality along with a survival benefit. Treatment was feasible with significant but manageable toxicity. Although our analysis is biased due to heterogeneous adherence to therapy, EU-RHAB provides the best available basis for phase I/II clinical trials. PMID:27228363

  5. 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.

  6. 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

  7. Adherence challenges with drugs for pre-exposure prophylaxis to prevent HIV infection

    PubMed Central

    Gengiah, Tanuja N.; Moosa, Atika; Naidoo, Anushka; Mansoor, Leila E.

    2013-01-01

    Background There are 34 million people living with HIV worldwide and each year this number increases. Until a vaccine is discovered, the prevention of new HIV infections remains an urgent priority. Several trials studying the use of oral and topical agents for the prevention of HIV infection have already been completed. Adherence has proved to be a major challenge in achieving product efficacy. Aim of the review To provide the clinical pharmacist with an understanding of the oral pre-exposure prophylaxis (PrEP) and topical microbicide product pipeline whilst emphasizing the critical importance of adherence to these drugs to avert HIV infection. Methods PubMed/Medline and the web-based clinical trials registry (ClinTrials.gov) were searched using appropriate key words. For the time period 1992 to 2013 - all phase II and phase III safety and effectiveness studies - testing agents for prevention of HIV infection were included in the review., Efficacy estimates, adherence estimates and reported challenges with adherence were extracted. Results Twenty four phase II and III clinical trials were found during review. Of these, 20 trials have been completed, and six trials show effectiveness in preventing HIV infection. The majority of the successful trials were to oral PrEP and to date only one microbicide trial of a vaginal antiretroviral microbicide gel has showed effectiveness. Adherence to study product played a major role in trial outcomes and there are several reasons for non-adherence. These include high on-trial pregnancy rates, low trial retention rates, low participant perception of risk, participant characteristics such as age<25 years, single status, migratory partners and trial fatigue. Study product characteristics such as dosage form, dosing interval, as well as associated adverse events may also influence adherence. Conclusion Moderate to high adherence is critical to demonstrate efficacy of drugs for HIV prevention. For topical agents, intermittent use

  8. Examining Adherence With Recommendations for Follow-Up in the Prevention Among Colorectal Cancer Survivors Study

    PubMed Central

    Hawkins, Nikki A.; Berkowitz, Zahava; Rodriguez, Juan L.; Miller, Jacqueline W.; Sabatino, Susan A.; Pollack, Lori A.

    2015-01-01

    Purpose/Objectives To explore the impact of health professionals’ recommendations for medical follow-up among colorectal cancer (CRC) survivors. Design Cross-sectional survey. Setting Mailed surveys and telephone interviews with CRC survivors in California. Sample 593 adults diagnosed with a primary CRC six to seven years before the time of the study. Methods Participants were identified through California Cancer Registry records and invited to take part in a survey delivered via mail or through telephone interview. Main Research Variables The survey assessed cancer history, current preventive health practices, health status, demographics, and other cancer-related experiences. Findings More than 70% of CRC survivors received recommendations for routine checkups, surveillance colonoscopy, or other cancer screenings after completing CRC treatment, and 18%–22% received no such recommendations. Recommendations were sometimes given in writing. Receiving a recommendation for a specific type of follow-up was associated with greater adherence to corresponding guidelines for routine checkups, colonoscopy, mammography, and Papanicolaou testing. Receiving written (versus unwritten) recommendations led to greater adherence only for colonoscopy. Conclusions Most CRC survivors reported receiving recommendations for long-term medical follow-up and largely adhered to guidelines for follow-up. Receiving a health professional’s recommendation for follow-up was consistently associated with patient adherence, and limited evidence showed that recommendations in written form led to greater adherence than unwritten recommendations. Implications for Nursing Given the increasingly important role of the oncology nurse in survivorship care, nurses can be instrumental in ensuring appropriate surveillance and follow-up care among CRC survivors. Conveying recommendations in written form, as is done in survivorship care plans, may be particularly effective. PMID:25901375

  9. Peritoneal Dialysis Registry With 2012 Survey Report.

    PubMed

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

    2015-12-01

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

  10. Psychological Determinants of Adolescent Exercise Adherence.

    ERIC Educational Resources Information Center

    Douthitt, Vicki L.

    1994-01-01

    High school physical education students completed questionnaires which represented four psychological variables, and one physical activity variable (exercise adherence) in classroom setting (n=132) and in summer setting (n=110). Found Perceived Romantic Appeal predictive of male exercise adherence and Perceived Athletic Competency, Perceived…

  11. Predicting asthma exacerbations employing remotely monitored adherence.

    PubMed

    Killane, Isabelle; Sulaiman, Imran; MacHale, Elaine; Breathnach, Aoife; Taylor, Terence E; Holmes, Martin S; Reilly, Richard B; Costello, Richard W

    2016-03-01

    This Letter investigated the efficacy of a decision-support system, designed for respiratory medicine, at predicting asthma exacerbations in a multi-site longitudinal randomised control trial. Adherence to inhaler medication was acquired over 3 months from patients with asthma employing a dose counter and a remote monitoring adherence device which recorded participant's inhaler use: n = 184 (23,656 audio files), 61% women, age (mean ± sd) 49.3 ± 16.4. Data on occurrence of exacerbations was collected at three clinical visits, 1 month apart. The relative risk of an asthma exacerbation for those with good and poor adherence was examined employing a univariate and multivariate modified Poisson regression approach; adjusting for age, gender and body mass index. For all months dose counter adherence was significantly (p < 0.01) higher than remote monitoring adherence. Overall, those with poor adherence had a 1.38 ± 0.34 and 1.42 ± 0.39 (remotely monitored) and 1.25 ± 0.32 and 1.18 ± 0.31 (dose counter) higher relative risk of an exacerbation in model 1 and model 2, respectively. However, this was not found to be statistically significantly different. Remotely monitored adherence holds important clinical information and future research should focus on refining adherence and exacerbation measures. Decision-support systems based on remote monitoring may enhance patient-physician communication, possibly reducing preventable adverse events. PMID:27222733

  12. 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…

  13. Australia and New Zealand Dialysis and Transplant Registry

    PubMed Central

    McDonald, Stephen P

    2015-01-01

    The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered include demographic details, primary renal disease, type of renal replacement therapy, process measures, and a variety of outcomes. From this data collection a number of themes of work are produced. These include production of Registry reports with an extensive range of national and regional data, a suite of quality assurance reports, key process indicator (KPI) reports, and data sets for a variety of audit and research purposes. The various types of information from the ANZDATA Registry are used in a wide variety of areas, including health services planning, safety and quality programs, and clinical research projects. PMID:26097784

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

    PubMed Central

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

    2013-01-01

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

  15. European operative registry to avoid complications in operative gynecology.

    PubMed

    Putz, Andreas; Bohlin, Tonje; Rakovan, Martin; Putz, Ariane Maria; De Wilde, Rudy Leon

    2016-08-01

    The aim of this study is to determine how complications can be avoided in gynecological minimally invasive surgery in Europe. The Norwegian Gynecological Endoscopic Registry (NGER) facilitates medical research over a long duration. Can experiences from the Norwegian registry be used to develop a European registry to avoid complications? To answer this question, we used the NGER data from February 2013 until March 2015 to analyze the complications of gynecological endoscopy. The registry includes sociodemographic factors, related comorbidity, previous surgery, present procedure, and intraoperative complications. Postoperative complications were identified with a questionnaire administered 4 weeks after surgery. The risk factors leading to complications in gynecological endoscopy were found to be obesity, diabetes mellitus, heart disease, hypertension, previous surgery due to cervical carcinoma in situ, and low educational level. Regional differences in the complication rate were noted. National web-based operation registries such as the NGER can identify the risk factors for complications of gynecological endoscopic surgery and can help improve the outcome after surgery. The experience from NGER can be used to establish a European register. PMID:26805611

  16. 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

  17. A Brief Adherence Intervention that Improved Glycemic Control: Mediation by Patterns of Adherence

    PubMed Central

    de Vries McClintock, Heather F.; Morales, Knashawn H.; Small, Dylan S.; Bogner, Hillary R.

    2014-01-01

    This study examined whether longitudinal adherence profiles mediated the relationship between a brief adherence intervention and glycemic control among patients with Type 2 diabetes. Adherence was assessed using the Medication Event Monitoring System (MEMS). Longitudinal analysis via growth curve mixture modeling was carried out to classify patients according to patterns of adherence to oral hypoglycemic agents. Hemoglobin A1c (HbA1c) assays were used to measure glycemic control as the clinical outcome. Across the whole sample, longitudinal adherence profiles mediated 35.2% (13.2%, 81.0%) of the effect of a brief adherence intervention on glycemic control (from odds ratio (OR) = 8.48, 95% CI (3.24, 22.2) to 4.00, 95% CI (1.34, 11.93)). Our results suggest that patients in the intervention had better glycemic control largely due to their greater likelihood of adherence to oral hypoglycemic agents. PMID:24913600

  18. 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

  19. 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

  20. 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.

  1. Through the looking glass: 21st century trauma registry innovations.

    PubMed

    Walters, Madonna R; Huehl, Susan; Fuller, Kimberly

    2006-01-01

    Trauma registries can be invaluable tools for improving quality of care and monitoring patient outcomes, but many function below their full potential. Reliance on low-tech, manual data management methods, such as the retyping of demographic information, can lead to inefficiency, increased personnel costs, and potential error. One low-cost solution is a digital interface between the medical records coding database and the trauma registry, allowing the registrar to pull demographic information and ICD-9 diagnostic and procedure codes directly from a reliable source without re-keying them. We created a batch interface for that purpose, reducing the burden of manual data entry and decreasing the time needed to complete patient records in the registry. The interface has eliminated our backlog and allowed the trauma registrar to focus on creating timely reports to track quality indicators. PMID:17052092

  2. 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

  3. Patient-reported outcome measures in arthroplasty registries.

    PubMed

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

    2016-07-01

    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

  4. 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

  5. RegTAP - a New API to the VO Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.

    2015-09-01

    The Virtual Observatory (VO) Registry is a comprehensive directory of astronomical services maintained collaboratively by major data centers across the globe. Until now, the API to the Registry as used by clients and users relied on several outdated standards, and has interoperability issues with more advanced queries. With RegTAP, there is now a relational schema exposed via the VO's Table Access Protocol as implemented by many clients, and several compliant services already exist. While many users will just use UIs operating RegTAP , both advanced users and client authors will want to directly operate the API. This paper provides an overview of RegTAP.

  6. 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.

  7. CMS Run Registry: Data Certification Bookkeeping and Publication System

    NASA Astrophysics Data System (ADS)

    Rapsevicius, V.; CMS DQM Group

    2011-12-01

    The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.

  8. 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.

  9. 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.

  10. Creating an effective clinical registry for rare diseases.

    PubMed

    D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph

    2016-06-01

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

  11. Creating an effective clinical registry for rare diseases

    PubMed Central

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

    2015-01-01

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

  12. IVOA Registry Relational Schema Version 1.0

    NASA Astrophysics Data System (ADS)

    Demleitner, Markus; Harrison, Paul; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos; Demleitner, Markus

    2014-12-01

    Registries provide a mechanism with which VO applications can discover and select resources -- first and foremost data and services -- that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.

  13. Portrait of Candida albicans Adherence Regulators

    PubMed Central

    Finkel, Jonathan S.; Xu, Wenjie; Huang, David; Hill, Elizabeth M.; Desai, Jigar V.; Woolford, Carol A.; Nett, Jeniel E.; Taff, Heather; Norice, Carmelle T.; Andes, David R.; Lanni, Frederick; Mitchell, Aaron P.

    2012-01-01

    Cell-substrate adherence is a fundamental property of microorganisms that enables them to exist in biofilms. Our study focuses on adherence of the fungal pathogen Candida albicans to one substrate, silicone, that is relevant to device-associated infection. We conducted a mutant screen with a quantitative flow-cell assay to identify thirty transcription factors that are required for adherence. We then combined nanoString gene expression profiling with functional analysis to elucidate relationships among these transcription factors, with two major goals: to extend our understanding of transcription factors previously known to govern adherence or biofilm formation, and to gain insight into the many transcription factors we identified that were relatively uncharacterized, particularly in the context of adherence or cell surface biogenesis. With regard to the first goal, we have discovered a role for biofilm regulator Bcr1 in adherence, and found that biofilm regulator Ace2 is a major functional target of chromatin remodeling factor Snf5. In addition, Bcr1 and Ace2 share several target genes, pointing to a new connection between them. With regard to the second goal, our findings reveal existence of a large regulatory network that connects eleven adherence regulators, the zinc-response regulator Zap1, and approximately one quarter of the predicted cell surface protein genes in this organism. This limited yet sensitive glimpse of mutant gene expression changes had thus defined one of the broadest cell surface regulatory networks in C. albicans. PMID:22359502

  14. Adherence to Antihypertensive Medications in Iranian Patients

    PubMed Central

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

    2016-01-01

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

  15. 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

  16. 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. PMID:22753342

  17. 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

  18. 78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-01-09

    ... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...

  19. A randomized trial to increase colonoscopy screening in members of high risk families in the Colorectal Cancer Family Registry and Cancer Genetics Network

    PubMed Central

    Lowery, Jan T; Horick, Nora; Kinney, Anita Y; Finkelstein, Dianne M; Garrett, Kathleen; Haile, Robert W; Lindor, Noralane M.; Newcomb, Polly A.; Sandler, Robert S.; Burke, Carol; Hill, Deirdre A.; Ahnen, Dennis J

    2014-01-01

    Background Individuals with a strong family history of colorectal cancer (CRC) have significant risk for CRC, though adherence to colonoscopy screening in these groups remains low. This study assessed whether a tailored, telephone counseling intervention can increase adherence to colonoscopy in members of high risk families in a randomized, controlled trial. Methods Eligible participants were recruited from two national cancer registries if they had a first-degree relative with CRC under age 60 or multiple affected family members, which included families that met Amsterdam criteria for Hereditary Non-Polyposis Colon Cancer, and if they were due for colonoscopy within 24-months. Participants were randomized to receive a tailored, telephone intervention grounded in behavioral theory or a mailed packet with general information about screening. Colonoscopy status was assessed through follow-up surveys and endoscopy reports. Cox-proportional hazards models were used to assess intervention effect. Results Of the 632 participants (aged 25–80), 60% were female, the majority were White, non-Hispanic, educated and had health insurance. Colonoscopy adherence increased 11 percentage points in the tailored, telephone intervention group, compared to no significant change in the mailed group. The telephone intervention was associated with a 32% increase in screening adherence compared to the mailed intervention (Hazard Ratio=1.32; p=0.01). Conclusions A tailored, telephone intervention can effectively increase colonoscopy adherence in high risk persons. This intervention has the potential for broad dissemination to health-care organizations or other high risk populations. Impact Increasing adherence to colonoscopy among persons with increased CRC risk could effectively reduce incidence and mortality from this disease. PMID:24501379

  20. 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.

  1. 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

  2. National Marrow Donor Program and Be The Match Registry

    MedlinePlus

    ... version of this page please turn Javascript on. Feature: Bone Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the federal government, the ...

  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. 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...

  5. 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...

  6. 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...

  7. 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.

  8. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products... ENC ® cells were provided to each customer; (ii) Edition number of each cell provided; (iii) Updates provided for each cell; (iv) Method of distribution for each customer. (2) The registry may also...

  9. 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. PMID:21488473

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

    ERIC Educational Resources Information Center

    Weisgerber, David W.

    1997-01-01

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

  11. Fifty years of ERA-EDTA Registry—a registry in transition

    PubMed Central

    Jager, Kitty J; Wanner, Christoph

    2015-01-01

    In 1964 the ERA-EDTA Registry was started as one of the first renal registries in the world. This meeting report describes how this European registry has developed over the 50 years of its existence. Where the first report presented patient numbers, nowadays the Registry acts as a platform for collaborative renal research in Europe. In addition, it provides training in epidemiology methods to nephrologists and other renal researchers. PMID:26097780

  12. 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

  13. Oral anticancer agent medication adherence by outpatients.

    PubMed

    Kimura, Michio; Usami, Eiseki; Iwai, Mina; Nakao, Toshiya; Yoshimura, Tomoaki; Mori, Hiromi; Sugiyama, Tadashi; Teramachi, Hitomi

    2014-11-01

    In the present study, medication adherence and factors affecting adherence were examined in patients taking oral anticancer agents. In June 2013, 172 outpatients who had been prescribed oral anticancer agents by Ogaki Municipal Hospital (Ogaki, Gifu, Japan) completed a questionnaire survey, with answers rated on a five-point Likert scale. The factors that affect medication adherence were evaluated using a customer satisfaction (CS) analysis. For patients with good and insufficient adherence to medication, the median ages were 66 years (range, 21-85 years) and 73 years (range, 30-90 years), respectively (P=0.0004), while the median dosing time was 131 days (range, 3-3,585 days) and 219 days (24-3,465 days), respectively (P=0.0447). In 36.0% (62 out of 172) of the cases, there was insufficient medication adherence; 64.5% of those cases (40 out of 62) showed good medication compliance (4-5 point rating score). However, these patients did not fully understand the effects or side-effects of the drugs, giving a score of three points or less. The percentage of patients with good medication compliance was 87.2% (150 out of 172). Through the CS analysis, three items, the interest in the drug, the desire to consult about the drug and the condition of the patient, were extracted as items for improvement. Overall, the medication compliance of the patients taking the oral anticancer agents was good, but the medication adherence was insufficient. To improve medication adherence, a better understanding of the effectiveness and necessity of drugs and their side-effects is required. In addition, the interest of patients in their medication should be encouraged and intervention should be tailored to the condition of the patient. These steps should lead to improved medication adherence. PMID:25295117

  14. Oral anticancer agent medication adherence by outpatients

    PubMed Central

    KIMURA, MICHIO; USAMI, EISEKI; IWAI, MINA; NAKAO, TOSHIYA; YOSHIMURA, TOMOAKI; MORI, HIROMI; SUGIYAMA, TADASHI; TERAMACHI, HITOMI

    2014-01-01

    In the present study, medication adherence and factors affecting adherence were examined in patients taking oral anticancer agents. In June 2013, 172 outpatients who had been prescribed oral anticancer agents by Ogaki Municipal Hospital (Ogaki, Gifu, Japan) completed a questionnaire survey, with answers rated on a five-point Likert scale. The factors that affect medication adherence were evaluated using a customer satisfaction (CS) analysis. For patients with good and insufficient adherence to medication, the median ages were 66 years (range, 21–85 years) and 73 years (range, 30–90 years), respectively (P=0.0004), while the median dosing time was 131 days (range, 3–3,585 days) and 219 days (24–3,465 days), respectively (P=0.0447). In 36.0% (62 out of 172) of the cases, there was insufficient medication adherence; 64.5% of those cases (40 out of 62) showed good medication compliance (4–5 point rating score). However, these patients did not fully understand the effects or side-effects of the drugs, giving a score of three points or less. The percentage of patients with good medication compliance was 87.2% (150 out of 172). Through the CS analysis, three items, the interest in the drug, the desire to consult about the drug and the condition of the patient, were extracted as items for improvement. Overall, the medication compliance of the patients taking the oral anticancer agents was good, but the medication adherence was insufficient. To improve medication adherence, a better understanding of the effectiveness and necessity of drugs and their side-effects is required. In addition, the interest of patients in their medication should be encouraged and intervention should be tailored to the condition of the patient. These steps should lead to improved medication adherence. PMID:25295117

  15. 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

  16. 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…

  17. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-11-19

    ... AFFAIRS Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request AGENCY...-to-date Agent Orange Registry. DATES: Written comments and recommendations on the proposed collection... information technology. Title: Agent Orange Registry Code Sheet, VA Form 10-9009. OMB Control Number:...

  18. 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...

  19. 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…

  20. 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.

  1. Developing a provisional and national renal disease registry for Iran

    PubMed Central

    Ajami, Sima; Askarianzadeh, Mahdi; Mortazavi, Mojgan

    2015-01-01

    Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR) characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients’ characteristics as well as risk factors which eventually leads to making better decisions. PMID:26109970

  2. 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

  3. Microbicide clinical trial adherence: insights for introduction.

    PubMed

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

    2013-01-01

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

  4. 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. PMID:26070585

  5. 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

  6. 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

  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. 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. PMID:22186771

  9. Adherence to Glycemic Monitoring in Diabetes

    PubMed Central

    Patton, Susana R.

    2015-01-01

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

  10. Linking cancer registry and hospital discharge data for treatment surveillance.

    PubMed

    Lin, Ge; Ma, Jihyun; Zhang, Lei; Qu, Ming

    2013-06-01

    Cancer registry data often lack complete chemotherapy and radiation therapy information. To conduct treatment disparity surveillance, we linked 2005-2009 Nebraska Cancer Registry data with Nebraska hospital discharge data. Due to the high quality of both datasets and the proposed linkage procedure, we had a linkage rate of 97 percent. We demonstrate the utilization of the linked dataset in case finding, treatment update, and treatment surveillance. The results show that the linked dataset is likely to identify up to 5 percent of potential missed cases. We investigated the use of radiation therapy in treating colorectal and breast cancers as case-finding examples. The linked dataset found 12 percent and 14 percent more treatment cases for colorectal and breast cancer patients, respectively. PMID:23715212

  11. The Florida State Twin Registry: research aims and design.

    PubMed

    Taylor, Jeanette E; James, Lisa M; Reeves, Mark D; Bobadilla, Leonardo

    2006-12-01

    Relatively little is known about the relationship of most personality disorders to executive cognitive functioning despite their associations with frontal cortex activity. Research on genetic influence is lacking for most personality disorders, and research on genetic influences associated with executive cognitive functioning is sparse and mixed. The Florida State Twin Registry was created to conduct a pilot twin study aimed at examining genetic influence on personality disorders and executive cognitive functioning. Measures included structured clinical interviews for symptoms and diagnoses of personality disorders (borderline, histrionic, narcissistic, antisocial, obsessive-compulsive, avoidant, and dependent), depression, substance abuse/dependence, anxiety disorders, and eating disorders. The Wisconsin Card Sorting Test and the Stroop Color-Word Test were administered to assess executive cognitive functioning. Self-report questionnaires were included to assess maladaptive personality traits. Data sharing and future directions for growing the Florida State Twin Registry are discussed. PMID:17254436

  12. 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

  13. Tracking Diabetes: New York City's A1C Registry

    PubMed Central

    Chamany, Shadi; Silver, Lynn D; Bassett, Mary T; Driver, Cynthia R; Berger, Diana K; Neuhaus, Charlotte E; Kumar, Namrata; Frieden, Thomas R

    2009-01-01

    Context: In December 2005, in characterizing diabetes as an epidemic, the New York City Board of Health mandated the laboratory reporting of hemoglobin A1C laboratory test results. This mandate established the United States’ first population-based registry to track the level of blood sugar control in people with diabetes. But mandatory A1C reporting has provoked debate regarding the role of public health agencies in the control of noncommunicable diseases and, more specifically, both privacy and the doctor-patient relationship. Methods: This article reviews the rationale for adopting the rule requiring the reporting of A1C test results, experience with its implementation, and criticisms raised in the context of the history of public health practice. Findings: For many decades, public health agencies have used identifiable information collected through mandatory laboratory reporting to monitor the population's health and develop programs for the control of communicable and noncommunicable diseases. The registry program sends quarterly patient rosters stratified by A1C level to more than one thousand medical providers, and it also sends letters, on the provider's letterhead whenever possible, to patients at risk of diabetes complications (A1C level >9 percent), advising medical follow-up. The activities of the registry program are similar to those of programs for other reportable conditions and constitute a joint effort between a governmental public health agency and medical providers to improve patients’ health outcomes. Conclusions: Mandatory reporting has proven successful in helping combat other major epidemics. New York City's A1C Registry activities combine both traditional and novel public health approaches to reduce the burden of an epidemic chronic disease, diabetes. Despite criticism that mandatory reporting compromises individuals’ right to privacy without clear benefit, the early feedback has been positive and suggests that the benefits will

  14. 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

  15. 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.

  16. 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

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Material Safety Data Sheets (MSDSs) listed reflect product inventories and associated MSDSs which were submitted to the Toxic Substance Registry data base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of NASA Kennedy. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at NASA Kennedy. Indices are provided for manufacturers, trademarks, and stock numbers.

  18. Spectral line-diode registry effects with photodiode array detectors

    SciTech Connect

    Winge, R.K.; Fassel, V.A.; Eckels, D.E.

    1986-05-01

    A limitation of photodiode array detectors for spectroscopic intensity measurements relates to the spacing of the diodes and the errors generated when a spectral line is not in exact registry with the diode or diodes from which its intensity is being measured. These misregistry intensity errors, which may be as high as 25 to 30%, are documented for a range of spectral bandwidths and for single diode (pixel) intensities and multiple diode summations of intensities.

  19. [The Italian ArthroPlasty Registry: a model to export?].

    PubMed

    Torre, Marina; Romanini, Emilio

    2016-05-01

    Medical devices (MD) registries are essentials to evaluate outcomes. They represent a key tool to support market surveillance and vigilance, being critical to identify and characterize the implants, assess their performance and trace patients in case of recall. Therefore, the recent "Proposal for a Regulation of the European Parliament and of the Council on medical devices" asked both the Commission and the Member States to take all appropriate measures to encourage the establishment of registers for specific types of devices, setting common principles to collect comparable information. In Italy more than 170.000 joint replacements were performed in 2013 in over 750 hospitals. Experiences at international level and in some Italian regions show that data from registries are crucial to define the best approach to joint replacement surgery. Results from registries can lead to changes in clinical practice, adopting the best available evidence and avoiding choices associated with poorer outcomes. The Italian Arthroplasty Registry project (RIAP) started in 2006 funded by the DG of Medical Devices and Pharmaceutical Service of the Ministry of Health. Data collection uses Hospital Discharge Records integrated by additional information essential to describe the procedure and identify the implants. As soon as the new European Regulation is approved, a Unique Device Identifier will be assigned to every device. Lacking this information, device identification is currently possible by browsing the RIAP MD Library that includes about 55,000 records and is constantly updated by 60 Manufacturers. The model designed within the RIAP project is simple and might be applied for every implanted device when the additional minimum dataset is defined. PMID:27311121

  20. 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.

  1. Disease Registries on the Nationwide Health Information Network

    PubMed Central

    Russler, Daniel

    2011-01-01

    Background: Donation by individuals of their protected health information (PHI) for evidence-based research potentially benefits all individuals with disease through improved understandings of disease patterns. In the future, a better understanding of how disease features combine into unique patterns of disease will generate new disease classifications, supporting greater specificity in health management techniques. However, without large numbers of people who donate their PHI to disease registries designed for research, it is difficult for researchers to discover the existence of complex patterns or to create more specific evidence-based management techniques. In order to identify new opportunities in disease registry design, an analysis of the current stage of maturity of the newly created U.S. Nationwide Health Information Network (NwHIN) related to large-scale consumer donation of PHI is presented. Methods: Utilizing a use–case analysis methodology, the consumer-centric designs of the policies and technologies created for the NwHIN were examined for the potential to support consumer donations of PHI to research. Results: The NwHIN design has placed the enforcement point for the policy-based release of PHI over the Internet into a specialized gateway accessible to consumer authorization. However, current NwHIN policies leave the final decision regarding release of PHI for research to the health care providers rather than to the consumers themselves. Conclusions: Should disease registries designed for research be established on the NwHIN, consumers might then directly authorize the donation of their PHI to these disease registries. However, under current NwHIN policies, consumer authorization does not guarantee release of PHI by health providers. PMID:21722569

  2. 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...

  3. Strategies to Increase Adherence through Diabetes Technology

    PubMed Central

    Gabbay, Robert A.; Durdock, Kendra

    2010-01-01

    A variety of new technologies have been developed to assist patients with self-managing their diabetes and yet hemoglobin A1c has not changed dramatically over the last decade. Although more data available from these new diabetes technologies can be helpful, it is clear that an informed, motivated, and adherent patient is the key to success. This article focuses on increasing patient adherence through the use of motivational interviewing, an evidence-based behavior change counseling technique. Specific skills of motivational interviewing may help the provider assess what the patient already knows about the technology, explore the patient's motivation for using the technology, and, finally, assess the patient's barriers, importance, and confidence in using the technology, leading to better adherence. PMID:20513334

  4. Strategies to increase adherence through diabetes technology.

    PubMed

    Gabbay, Robert A; Durdock, Kendra

    2010-05-01

    A variety of new technologies have been developed to assist patients with self-managing their diabetes and yet hemoglobin A1c has not changed dramatically over the last decade. Although more data available from these new diabetes technologies can be helpful, it is clear that an informed, motivated, and adherent patient is the key to success. This article focuses on increasing patient adherence through the use of motivational interviewing, an evidence-based behavior change counseling technique. Specific skills of motivational interviewing may help the provider assess what the patient already knows about the technology, explore the patient's motivation for using the technology, and, finally, assess the patient's barriers, importance, and confidence in using the technology, leading to better adherence. PMID:20513334

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

    PubMed Central

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

    2014-01-01

    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. PMID:25386353

  6. 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

  7. 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

  8. Comparability, Diagnostic Validity and Completeness of Nigerian Cancer Registries

    PubMed Central

    al-Haddad, B.J.S.; Jedy-Agba, Elima; Oga, Emmanuel; Ezeome, E.R.; Obiorah, Christopher C.; Okobia, Michael; Ogunbiyi, J. Olufemi; Ukah, Cornelius Ozobia; Omonisi, Abidemi; Nwofor, A.M.E.; Igbinoba, Festus; Adebamowo, Clement

    2015-01-01

    Background Like many countries in Africa, Nigeria is improving the quality and coverage of its cancer surveillance. This work is essential to address this growing category of chronic diseases, but is made difficult by economic, geographic and other challenges. Purpose To evaluate the completeness, comparability and diagnostic validity of Nigeria’s cancer registries. Methods Completeness was measured using children’s age-specific incidence (ASI) and an established metric based on a modified Poisson distribution with regional comparisons. We used a registry questionnaire as well as percentages of death-certificate-only cases, morphologically verified cases, and case registration errors to examine comparability and diagnostic validity. Results Among the children’s results, we found that over half of all cancers were non-Hodgkin lymphoma. There was also evidence of incompleteness. Considering the regional completeness comparisons, we found potential evidence of cancer-specific general incompleteness as well as what appears to be incompleteness due to inability to diagnose specific cancers. We found that registration was generally comparable, with some exceptions. Since autopsies are not common across Nigeria, coding for both them and death-certificate-only cases was also rare. With one exception, registries in our study had high rates of morphological verification of female breast, cervical and prostate cancers. Conclusions Nigeria’s registration procedures were generally comparable to each other and to international standards, and we found high rates of morphological verification, suggesting high diagnostic validity. There was, however, evidence of incompleteness. PMID:25863982

  9. 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

  10. A Review of Treatment Adherence Measurement Methods

    PubMed Central

    Schoenwald, Sonja K.; Garland, Ann F.

    2013-01-01

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

  11. [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

  12. [Adherence to statins: updates and practical proposals].

    PubMed

    Bauwens, Marine; Schneider, Marie-paule; Nanchen, David

    2016-03-01

    Statins are an established treatment for dyslipidemia, because they were shown to decrease the cardiovascular risk by 25%. However, one third of patients using statins don't take them regularly. Statin intolerance is an important risk factor for nonadherence, but health literacy and lack of education regarding the cardiovascular benefits are also important triggers for poor adherence to statins. A better communication between the caregiver and his patient, by taking patient's perspectives into account could help find effective solutions. This article reviews the issue of statins adherence and suggests solutions to improve it. PMID:27089601

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

    PubMed Central

    Kronish, Ian M; Ye, Siqin

    2013-01-01

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

  14. Medication adherence to oral anticancer drugs: systematic review.

    PubMed

    Huang, Wen-Chuan; Chen, Chung-Yu; Lin, Shun-Jin; Chang, Chao-Sung

    2016-04-01

    Many studies have demonstrated that non-adherence to oral anticancer drugs (OACDs) has challenged treatment efficacy. Otherwise, few validated tools exist to measure patients' adherence to medication regimen in clinical practice. To synthesize previous studies on adherence by cancer patients taking OACDs, especially in targeted therapy, a systematic search of several electronic databases was conducted. We analyzed existing scales' contents for various cancer patients and outcomes of studies assessing adherence. However, a well-validated scale designed particularly for OACD adherence is still lacking. Most adherence scales used in the studies reviewed contain items focused on measuring patients' medication-taking behavior more than their barriers to medication compliance and beliefs. However, non-adherence to OACDs is a complex phenomenon, and drug-taking barriers and patient beliefs significantly affect patients' non-adherence. To understand the key drivers and predisposing factors for non-adherence, we need to develop a well-validated, multidimensional scale. PMID:26935964

  15. 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

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

    PubMed Central

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

    2002-01-01

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

  17. Correlates of Adherence to Varenicline Among HIV+ Smokers

    PubMed Central

    Tseng, Tuo-Yen; Gonzalez, Mirelis; Krebs, Paul; Wong, Selena; Furberg, Robert; Sherman, Scott; Schoenthaler, Antoinette; Urbina, Anthony; Cleland, Charles M.

    2015-01-01

    Introduction: Low rates of adherence to smoking cessation pharmacotherapy may limit the effectiveness of treatment. However, few studies have examined adherence in smoking cessation trials thus, there is a limited understanding of factors that influence adherence behaviors. This brief report analyzes correlates of adherence to varenicline among people living with HIV/AIDS. Methods: Study participants were recruited from three HIV care centers in New York City and enrolled in a three-arm randomized controlled pilot study in which all subjects received varenicline. At the 1-month study visit, there were no significant differences in adherence by study condition, therefore we combined treatment arms to examine correlates of adherence (n = 127). We used pill counts to assess varenicline adherence, defined as taking at least 80% of the prescribed dose. We conducted a multivariate path analysis to assess factors proposed by the information-motivation-behavioral skills model to predict adherence. Results: Only 56% of smokers were at least 80% adherent to varenicline at 1 month. Adherence-related information, self-efficacy, a college degree, and non-Hispanic white race/ethnicity were associated with increased varenicline adherence. In path analysis, information and motivation were associated with increased adherence self-efficacy, and adherence self-efficacy was associated with increased adherence, but with marginal significance. These associations with adherence were no longer significant after controlling for race/ethnicity and education. Conclusions: Further exploration of the role of a modifiable correlates of adherence, such as adherence-related information, motivation and self-efficacy is warranted. Interventions are needed that can address disparities in these and other psychosocial factors that may mediate poor medication adherence. PMID:26180221

  18. 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).

  19. 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...

  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. 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

  2. A Higher Adherence to a Mediterranean-Style Diet Is Inversely Associated with the Development of Frailty in Community-Dwelling Elderly Men and Women12

    PubMed Central

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

    2012-01-01

    Adherence to a Mediterranean-style diet is associated with a lower risk for mortality, cognitive decline, and dementia. Whether adherence to a Mediterranean-style diet protects against age-related frailty is unclear. Therefore, our objective was to examine the association between a Mediterranean-style diet with the risk of frailty in community-dwelling older persons. We conducted longitudinal analyses using data from 690 community-living persons (≥65 y) who were randomly selected from a population registry in Tuscany, Italy. Participants of the Invecchiare in Chianti study of aging completed the baseline examination in 1998–2000 and were re-examined at least once over 6 y. Adherence to a Mediterranean-style diet (scored 0–9, modeled categorically as ≤3, 4–5, and ≥6) was computed from the European Prospective Investigation into Cancer and nutrition FFQ previously validated in this cohort. Frailty was defined as having at least 2 of the following criteria: poor muscle strength, feeling of exhaustion, low walking speed, and low physical activity. After a 6-y follow-up, higher adherence (score ≥6) to a Mediterranean-style diet was associated with lower odds of developing frailty [OR = 0.30 (95% CI: 0.14, 0.66)] compared with those with lower adherence (score ≤3). A higher adherence to a Mediterranean-style diet at baseline was also associated with a lower risk of low physical activity (OR = 0.62; 95% CI: 0.40, 0.96) and low walking speed [OR = 0.48 (95% CI: 0.27, 0.86)] but not with feelings of exhaustion and poor muscle strength. In community-dwelling older adults, higher adherence to a Mediterranean-style diet was inversely associated with the development of frailty. PMID:23096005

  3. Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

    PubMed

    Kuwatsuka, Yachiyo

    2016-01-01

    Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed. PMID:26563189

  4. 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

  5. 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.

  6. 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

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

    PubMed Central

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

    2009-01-01

    This non-experimental study used Mixed-Effects Regression Models (MRMs) to examine relations among supervisor adherence to a clinical supervision protocol, therapist adherence, and changes in the behavior and functioning of youth with serious antisocial behavior treated with an empirically supported treatment (i.e., Multisystemic Therapy), one-year post treatment. Participants were 1979 youth and families treated by 429 clinicians across 45 provider organizations in North America. Four dimensions of clinical supervision were examined. MRM results showed one dimension, supervisor focus on adherence to treatment principles, predicted greater therapist adherence. Two supervision dimensions, adherence to the structure and process of supervision, and focus on clinician development, predicted changes in youth behavior. Conditions required to test hypothesized mediation by therapist adherence of supervisor adherence effects on youth outcomes were not met, and direct effects of each were observed in models including both supervisor and therapist adherence. PMID:19485583

  8. 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

  9. 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

  10. The Pelvic Floor Disorders Registry: Purpose and Development.

    PubMed

    Bradley, Catherine S; Visco, Anthony G; Weber LeBrun, Emily E; Barber, Matthew D

    2016-01-01

    Pelvic organ prolapse (POP) is a common problem that negatively impacts women's quality of life. A variety of surgeries exist for POP treatment, including procedures performed with and without mesh augmentation. The growing use of mesh in prolapse surgeries in the 2000s was associated with increasing reports of complications, resulting in Food and Drug Administration (FDA) Safety Notifications, and in 2012, the FDA ordered transvaginal mesh manufacturers to conduct prospective studies to evaluate longer-term outcomes. These requirements provided incentives and an environment conducive to collaboration. American Urogynecologic Society leaders collaborated with device manufacturers, the FDA, and other professional organizations to establish the Pelvic Floor Disorders Registry (PFDR), a collection of interrelated registries, which could meet manufacturers' needs but also allow surgeons to track individual and aggregate outcomes for quality improvement. The PFDR was developed and launched by American Urogynecologic Society with objectives of (1) collecting, storing, and analyzing clinical data related to POP treatment; (2) establishing common data elements and quality metrics; and (3) providing a framework for external stakeholders to conduct POP research. The PFDR includes industry-sponsored studies, as well as 2 options for volunteer registry participation, the PFDR-Quality Improvement and PFDR-Research. The PFDR promotes quality improvement and national benchmarking and will provide real-world comparative safety and effectiveness data for prolapse surgeries. The PFDR can serve as a model for collaboration between medical practitioners, researchers, industry, and federal agencies and may allow progress toward our similar goal of high-quality surgical care of women with prolapse. PMID:26829344

  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. Commensurate registry and chemisorption at a hetero-organic interface.

    PubMed

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character. PMID:22463427

  13. Commensurate Registry and Chemisorption at a Hetero-organic Interface

    NASA Astrophysics Data System (ADS)

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F. Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character.

  14. Acquired von Willebrand syndrome: data from an international registry.

    PubMed

    Federici, A B; Rand, J H; Bucciarelli, P; Budde, U; van Genderen, P J; Mohri, H; Meyer, D; Rodeghiero, F; Sadler, J E

    2000-08-01

    The acquired von Willebrand syndrome (AvWS) is a rare bleeding disorder with laboratory findings similar to those of congenital von Willebrand disease (vWD). Despite the numerous cases reported in the literature until 1999 (n = 266), large studies on AvWS are not available. Moreover, diagnosis of AvWS has been difficult and treatment empirical. These considerations prompted us to organize an international registry. A questionnaire, devised to collect specific information on AvWS, was sent to all the members of the International Society on Thrombosis and Haemostasis (ISTH), who were invited to respond if they had diagnosed cases with the AvWS cases. 156 members answered the questionnaire and 54 of them sent information on 211 AvWS cases from 50 centers. Data were compared with those already published in the literature and 25 cases already described or not correctly diagnosed were excluded. The 186 AvWS cases that qualified for the registry were associated with lymphoproliferative (48%) and myeloproliferative disorders (15%), neoplasia (5%), immunological (2%), cardiovascular (21%) and miscellaneous disorders (9%). Ristocetin cofactor activity (vWF:RCo) or collagen binding activity (vWF:CBA) were usually low in AvWS (median values 20 U/dL, range 3-150), while factor VIII coagulant activity was sometimes normal (median 25 U/dL, range 3-191). FVIII/vWF inhibiting activities were present in only a minority of cases (16%). Bleeding episodes in AvWS were mostly of mucocutaneous type (68%) and were managed by DDAVP (32%), FVIII/vWF concentrates (37%), intravenous immunoglobulins (33%), plasmapheresis (19%), corticosteroids (19%) and immunosuppressive or chemotherapic agents (35%). Based upon the data of this international registry, it appears that AvWS is especially frequent in lympho- or myeloproliferative and cardiovascular diseases. Therefore, AvWS should be suspected and searched with the appropriate laboratory tests especially when excessive bleeding occurs in

  15. 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

  16. 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

  17. 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

  18. 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

  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. 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…

  1. Evaluation of medication adherence in Lebanese hypertensive patients.

    PubMed

    Yassine, Mohammad; Al-Hajje, Amal; Awada, Sanaa; Rachidi, Samar; Zein, Salam; Bawab, Wafa; Bou Zeid, Mayssam; El Hajj, Maya; Salameh, Pascale

    2016-09-01

    Controlling hypertension is essential in cardiovascular diseases. Poor medication adherence is associated with poor disease outcomes, waste of healthcare resources, and contributes to reduced blood pressure control. This study evaluates treatment adherence to antihypertensive therapy in Lebanese hypertensive patients by estimating the proportion of adherent hypertensive patients using a validated tool and investigates what factors predict this behavior. A questionnaire-based cross-sectional study was conducted on a random sample of 210 hypertensive outpatients selected from clinics located in tertiary-care hospitals and from private cardiology clinics located in Beirut. Adherence level was measured using a validated 8-item Modified Morisky Medication Adherence Scale (MMMAS). Among 210 patients, 50.5% showed high adherence, 27.1% medium adherence, and 22.4% low adherence to medication. Mean MMMAS score was 6.59±2.0. In bivariate analyses, having controlled blood pressure (p=0.003) and taking a combination drug (p=0.023) were predictors of high adherence. Forgetfulness (p<0.01), complicated drug regimen (p=0.001), and side effects (p=0.006) were predictors of low adherence after multiple liner regression. Logistic regression results showed that calcium channel blockers (p=0.030) were associated with increased adherence levels. In conclusion, developing multidisciplinary intervention programs to address the factors identified, in addition to educational strategies targeting healthcare providers, are necessary to enhance patient adherence. PMID:26232704

  2. Adherence indicators predict changes in health outcomes: HUB City Steps

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Participant adherence is a major threat to intervention effectiveness. Most researchers have reported effects of a single adherence measure on health outcomes. The objective of this analysis was to evaluate two adherence measures, separately and in combination, for predicting changes in health out...

  3. Analyzing Adherence to Prenatal Supplement: Does Pill Count Measure Up?

    PubMed Central

    Appelgren, Kristie E.; Nietert, Paul J.; Hulsey, Thomas C.; Hollis, Bruce W.; Wagner, Carol L.

    2010-01-01

    Objective. To determine if adherence as measured by pill count would show a significant association with serum-based measures of adherence. Methods. Data were obtained from a prenatal vitamin D supplementation trial where subjects were stratified by race and randomized into three dosing groups: 400 (control), 2000, or 4000 IU vitamin D3/day. One measurement of adherence was obtained via pill counts remaining compared to a novel definition for adherence using serum 25-hydroxy-vitamin D (25-OH-D) levels (absolute change in 25(OH)D over the study period and the subject's steady-state variation in their 25(OH)D levels). A multivariate logistic regression model examined whether mean percent adherence by pill count was significantly associated with the adherence measure by serum metabolite levels. Results. Subjects' mean percentage of adherence by pill count was not a significant predictor of adherence by serum metabolite levels. This finding was robust across a series of sensitivity analyses. Conclusions. Based on our novel definition of adherence, pill count was not a reliable predictor of adherence to protocol, and calls into question how adherence is measured in clinical research. Our findings have implications regarding the determination of efficacy of medications under study and offer an alternative approach to measuring adherence of long half-life supplements/medications. PMID:20169132

  4. 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

  5. Ethical Questions in Medical Electronic Adherence Monitoring.

    PubMed

    Campbell, Jeffrey I; Eyal, Nir; Musiimenta, Angella; Haberer, Jessica E

    2016-03-01

    Electronic adherence monitors (EAMs) record and report an array of health behaviors, ranging from taking daily medications to wearing medical devices. EAMs are utilized in research worldwide and are being investigated for clinical use. However, there is also growing popular concern about the extent to which electronic devices may be used to monitor individuals, including allegations in the media that EAMs represent a move towards "Big Brother" in medicine. Here, we highlight the unique benefits as well as the potential ethical challenges that electronic adherence monitoring generates. These challenges surround autonomy, privacy and confidentiality, trust, and ancillary care obligations. We describe key questions within each of these domains that warrant further investigation, and present potential solutions to many of the concerns raised. PMID:26358284

  6. 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

  7. 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

  8. Medication adherence in patients with schizophrenia.

    PubMed

    Phan, Stephanie V

    2016-01-01

    Medication nonadherence is common among patients with schizophrenia and due to a variety of factors including lack of insight, psychopathology, substance use disorder, issues associated with treatment, stigma, fragmentation of care, cultural influences, and socioeconomic status. Among this population, nonadherence is problematic because it can lead to decompensation or exacerbation of symptoms, relapse, rehospitalization or greater use of emergency psychiatric services, functional decline, and increased risk of death. Psychoeducational approaches alone are ineffective, but in combination with behavioral interventions, appear to be effective. Involving the patient's support system, in addition to other interventions, can improve treatment adherence. Many medication-related factors, such as effectiveness and tolerability of antipsychotics, regimen complexity, and past medication trials impact appropriate medication use. Therefore, optimizing the patient's pharmacotherapeutic regimens can improve adherence. Additional factors favorably influencing adherence include involving the patient in their treatment, fostering a therapeutic alliance, implementing/using reminder systems, and addressing substance use disorder. Medication nonadherence arises from multiple reasons that vary between patients. Thus, the most effective strategies to improve adherence are multifactorial and may involve both psychoeducational and behavioral techniques, as well as previously listed approaches. Strategies should be targeted toward the patient and their support system, whenever possible, to further improve the chances of appropriate medication use. Recognizing that all patients with schizophrenia are at risk for medication nonadherence is important. No one technique has been shown to be most effective; therefore, the risk for nonadherence should continually be assessed and multiple strategies should be targeted to the patient (and caregiver) and repeatedly implemented throughout the course

  9. 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

  10. First annual report of the Austrian CML registry.

    PubMed

    Schmidt, Stefan; Wolf, Dominik; Thaler, Josef; Burgstaller, Sonja; Linkesch, Wolfgang; Petzer, Andreas; Fridrik, Michael; Lang, Alois; Agis, Hermine; Valent, Peter; Krieger, Otto; Walder, Alois; Korger, Markus; Schlögl, Ernst; Sliwa, Tamer; Wöll, Ernst; Mitterer, Manfred; Eisterer, Wolfgang; Pober, Michael; Gastl, Günther

    2010-10-01

    The Austrian chronic myeloid leukemia (CML) registry monitors individual disease courses, treatments applied, clinical outcome, and side effects of CML patients on a nationwide basis to provide data on the "real-life" situation and to complement the information and interpretation gained from the selected patient population observed in clinical trials. This report summarizes the Austrian CML registry data as of March 2009. A total of 179 patients have been registered with a median number of 1012 follow-up visits and median observation duration of 20 months. At diagnosis most patients (n = 163) were in chronic phase (early, late, and secondary), whereas only 4 were in advanced phase. A total of 137 patients were treated with tyrosine kinase inhibitors (TKIs), of which 14 received first and second generation TKIs sequentially. Other treatment modalities included chemotherapy or interferon and stem cell transplantation (SCT). Cumulative incidence rates for complete hematological responses (CHR) were 91.6% and 94.4% at 12 and 24 months, respectively, compared to cumulative incidence rates of complete cytogenetical response rates of 64% and 80% at these timepoints. A total of 5 patients progressed from chronic phase to accelerated (n = 3) and blastic phase (n = 2) while receiving imatinib standard dose. Estimated overall survival (OS) rate at 60 months was 90% and progression free survival (PFS) according to European Leukemia Net (ELN) failure definition was 58%. PMID:20936366

  11. [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

  12. 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

  13. Renal registry in Hong Kong—the first 20 years

    PubMed Central

    Leung, Chi Bon; Cheung, Wai Lun; Li, Philip Kam Tao

    2015-01-01

    Renal Registry was started by the Hospital Authority (HA) in Hong Kong in 1995. It is an online system developed by HA. It collects all patients under care in HA, which is about 90–95 % of all requiring renal replacement therapy (RRT) in Hong Kong. The total number of patients treated increased from 3312 in 1996 to 8510 in 2013. In 2013, there were 3501 renal transplant, 1192 hemodialysis (HD) and 3817 peritoneal dialysis (PD) patients. In 2013, 1147 new patients joined the RRT program, 49.6% of them suffered from diabetic nephropathy. Glomerulonephritis and hypertension are the 2nd and 3rd most common causes of RRT in Hong Kong. The median age was 59.1 years with male to female ratio of 1.54 to 1. Hong Kong practices ‘PD first' policy and the majority of the patients are on CAPD treatment. The ratio of PD to HD was 76.2% to 23.8%. Eighty-six percent of all PD patients are on CAPD; the remaining 14% are on automated peritoneal dialysis (APD). Sixty-five percent of all dialysis patients are on erythropoiesis-stimulating agent treatment. The Hong Kong Renal Registry with online real-time data input and access can provide timely data and information to facilitate patient care and management and also provides invaluable data to help in development and planning of renal services in Hong Kong. PMID:26097783

  14. 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.

  15. The role of cancer registries in cancer control.

    PubMed

    Parkin, Donald Maxwell

    2008-04-01

    Cancer control aims to reduce the incidence, morbidity, and mortality of cancer and to improve the quality of life of cancer patients through the systematic implementation of evidence-based interventions in prevention, early diagnosis, treatment, and palliative care. In the context of a national cancer control program (NCCP), a cancer surveillance program (CSP), built around a population-based cancer registry, is an essential element. Data on the size and evolution of the cancer burden in the population are essential to evaluation of the current situation, to setting objectives for cancer control, and defining priorities. Cancer data are essential in monitoring the progress of the implementation of an NCCP, as well as providing an evaluation of the many individual cancer control activities. In the context of an NCCP, the CSP should provide a focus of epidemiological expertise, not only for providing statistical data on incidence, mortality, stage distribution, treatment patterns, and survival but also for conducting studies into the important causes of cancer in the local situation, and for providing information about the prevalence of exposure to these factors in the population. Cancer surveillance via the population-based registry therefore plays a crucial role in formulating cancer control plans, as well as in monitoring their success. PMID:18463952

  16. Database structure for the Laser Accident and Incident Registry (LAIR)

    NASA Astrophysics Data System (ADS)

    Ness, James W.; Hoxie, Stephen W.; Zwick, Harry; Stuck, Bruce E.; Lund, David J.; Schmeisser, Elmar T.

    1997-05-01

    The ubiquity of laser radiation in military, medical, entertainment, telecommunications and research industries and the significant risk, of eye injury from this radiation are firmly established. While important advances have been made in understanding laser bioeffects using animal analogues and clinical data, the relationships among patient characteristics, exposure conditions, severity of the resulting injury, and visual function are fragmented, complex and varied. Although accident cases are minimized through laser safety regulations and control procedures, accumulated accident case information by the laser eye injury evaluation center warranted the development of a laser accident and incident registry. The registry includes clinical data for validating and refining hypotheses on injury and recovery mechanisms; a means for analyzing mechanisms unique to human injury; and a means for identifying future areas of investigation. The relational database supports three major sections: (1) the physics section defines exposure circumstances, (2) the clinical/ophthalmologic section includes fundus and scanning laser ophthalmoscope images, and (3) the visual functions section contains specialized visual function exam results. Tools are available for subject-matter experts to estimate parameters like total intraocular energy, ophthalmic lesion grade, and exposure probability. The database is research oriented to provide a means for generating empirical relationships to identify symptoms for definitive diagnosis and treatment of laser induced eye injuries.

  17. Evidence-based programs registry: blueprints for Healthy Youth Development.

    PubMed

    Mihalic, Sharon F; Elliott, Delbert S

    2015-02-01

    There is a growing demand for evidence-based programs to promote healthy youth development, but this growth has been accompanied by confusion related to varying definitions of evidence-based and mixed messages regarding which programs can claim this designation. The registries that identify evidence-based programs, while intended to help users sift through the findings and claims regarding programs, has oftentimes led to more confusion with their differing standards and program ratings. The advantages of using evidence-based programs and the importance of adopting a high standard of evidence, especially when taking programs to scale,are described. One evidence-based registry is highlighted--Blueprints for Healthy Youth Development hosted at the University of Colorado Boulder. Unlike any previous initiative of its kind, Blueprints established unmatched standards for identifying evidence-based programs and has acted in a way similar to the FDA--evaluating evidence, data and research to determine which programs meet their high standard of proven efficacy. PMID:25193177

  18. 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. PMID:26485475

  19. Motivational factors of adherence to cardiac rehabilitation

    PubMed Central

    Shahsavari, Hooman; Shahriari, Mohsen; Alimohammadi, Nasrollah

    2012-01-01

    Background: Main suggested theories about patients’ adherence to treatment regimens recognize the importance of motivation in positive changes in behaviors. Since cardiac diseases are chronic and common, cardiac rehabilitation as an effective prevention program is crucial in management of these diseases. There is always concern about the patients’ adherence to cardiac rehabilitation. The aim of this study was to describe the motivational factors affecting the patients’ participation and compliance to cardiac rehabilitation by recognizing and understanding the nature of patients’ experiences. Materials and Methods: The participants were selected among the patients with cardiac diseases who were referred to cardiac rehabilitation in Isfahan Cardiovascular Research Center, Iran. The purposive sampling method was used and data saturation achieved after 8 semi-structured interviews. Findings: The three main concepts obtained from this study are “beliefs”, “supporters” and “group cohesion”. Conclusions: In cardiac rehabilitation programs, emphasis on motivational factors affects the patient’s adherence. It is suggested that in cardiac rehabilitation programs more attention should be paid to patients’ beliefs, the role of patients’ supporters and the role of group-based rehabilitation. PMID:23833634

  20. Four therapeutic diets: adherence and acceptability.

    PubMed

    Berkow, Susan E; Barnard, Neal; Eckart, Jill; Katcher, Heather

    2010-01-01

    Many health conditions are treated, at least in part, by therapeutic diets. Although the success of any intervention depends on its acceptability to the patient, the acceptability of therapeutic diets and factors that influence it have been largely neglected in nutrition research. A working definition of acceptability is proposed and an examination and summary are provided of available data on the acceptability of common diet regimens used for medical conditions. The goal is to suggest ways to improve the success of therapeutic diets. The proposed working definition of "acceptability" refers to the user's judgment of the advantages and disadvantages of a therapeutic diet-in relation to palatability, costs, and effects on eating behaviour and health-that influence the likelihood of adherence. Very low-calorie, reduced-fat omnivorous, vegetarian and vegan, and low-carbohydrate diets all achieve acceptability among the majority of users in studies of up to one year, in terms of attrition and adherence rates and results of questionnaires assessing eating behaviours. Longer studies are fewer, but they suggest that vegetarian, vegan, and reduced-fat diets are acceptable, as indicated by sustained changes in nutrient intake. Few studies of this length have been published for very low-calorie or low-carbohydrate diets. Long-term studies of adherence and acceptability of these and other therapeutic diets are warranted. PMID:21144137

  1. [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

  2. 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.

  3. 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

  4. 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

  5. Adherence to HIV antiretrovirals among persons with serious mental illness.

    PubMed

    Wagner, Glenn J; Kanouse, David E; Koegel, Paul; Sullivan, Greer

    2003-04-01

    Despite the absence of empirical evidence, serious mental illness is assumed to be a high risk factor for nonadherence to HIV antiretroviral regimens. To assess antiretroviral adherence among persons with serious mental illness, we conducted a study in which adherence was observed over a 2-week period with electronic monitoring bottle caps and self-report. Forty-seven participants enrolled, with all but two (96%) completing the study. Psychiatric diagnoses included bipolar depression (n = 24), schizophrenia (n = 12), schizoaffective disorder (n = 5), and major depression with psychotic features (n = 6). Mean adherence (proportion of prescribed doses taken) was 66% (standard deviation [SD] = 34), as measured by electronic monitoring; 40% demonstrated at least 90% adherence, but 31% had less than 50% adherence. Self-reported adherence to psychotropics was moderately correlated with self-reported (r = 0.45, p < 0.05) and electronically monitored (r = 0.39, p < 0.05) antiretroviral adherence. Viral load (log(10)) was negatively correlated with electronically monitored (r = -0.28, p < 0.10) and self-reported (r = -0.39, p < 0.05) antiretroviral adherence, after controlling for the length of time on treatment. These findings suggest that many patients with serious mental illness are able to adhere very well to antiretroviral regimens, yet a substantial proportion of our sample displayed poor adherence, indicating the need for research to further assess the factors that influence adherence to antiretrovirals in this population. PMID:12737641

  6. Iron Chelation Adherence to Deferoxamine and Deferasirox in Thalassemia

    PubMed Central

    Trachtenberg, Felicia; Vichinsky, Elliott; Haines, Dru; Pakbaz, Zahra; Mednick, Lauren; Sobota, Amy; Kwiatkowski, Janet; Thompson, Alexis A.; Porter, John; Coates, Thomas; Giardina, Patricia J.; Olivieri, Nancy; Yamashita, Robert; Neufeld, Ellis J.

    2015-01-01

    The Thalassemia Clinical Research Network collected adherence information from 79 patients on deferoxamine and 186 on deferasirox from 2007 to 2009. Chelation adherence was defined as percent of doses administered in the last 4 weeks (patient report) out of those prescribed (chart review). Chelation history since 2002 was available for 97 patients currently on deferoxamine and 217 on deferasirox, with crude estimates of adherence from chart review. Self-reported adherence to both deferoxamine and deferasirox were quite high, with slightly higher adherence to the oral chelator (97 vs. 92%). Ninety percent of patients on deferasirox reported at least 90% adherence, compared with 75% of patients on deferoxamine. Adherence to both chelators was highest in children, followed by adolescents and older adults. Predictors of lower deferoxamine adherence were smoking in the past year, problems sticking themselves (adults only), problems wearing their pump, and fewer transfusions in the past year. Predictors of lower deferasirox adherence were bodily pain and depression. Switching chelators resulted in increased adherence, regardless of the direction of the switch, although switching from deferoxamine to deferasirox was far more common. As adherence to deferoxamine is higher than previously reported, it appears beneficial for patients to have a choice in chelators. PMID:21523808

  7. Outcomes registry for better informed treatment of atrial fibrillation II: Rationale and design of the ORBIT-AF II registry

    PubMed Central

    Steinberg, Benjamin A.; Blanco, Rosalia G.; Ollis, Donna; Kim, Sunghee; Holmes, DaJuanicia N.; Kowey, Peter R.; Fonarow, Gregg C.; Ansell, Jack; Gersh, Bernard; Go, Alan S.; Hylek, Elaine; Mahaffey, Kenneth W.; Thomas, Laine; Chang, Paul; Peterson, Eric D.; Piccini, Jonathan P.

    2014-01-01

    Background Recent clinical trials have demonstrated the safety and efficacy of several non–vitamin K oral anticoagulants (NOACs) for the treatment of atrial fibrillation (AF). However, there are limited data on their use and outcomes in routine clinical practice, particularly among patients newly diagnosed as having AF and patients with AF recently transitioned to a NOAC. Methods/Design ORBIT-AF II is a multicenter, national registry of patients with AF that is enrolling up to 15,000 newly diagnosed patients with AF and/or those with AF recently transitioned to a NOAC from 300 US outpatient practices. These patients will be followed for up to 2 years, including clinical status, outcomes (major adverse cardiovascular events, bleeding), and management of anticoagulation surrounding bleeding events. In addition, detailed data regarding the use of these agents in and around cardiac procedures, their complications, and management of such complications will be collected. Conclusions The ORBIT-AF II registry will provide valuable insights into the safety and effectiveness of NOACs used in AF in community practice settings. PMID:25066554

  8. 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…

  9. Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

    PubMed Central

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

    2014-01-01

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

  10. 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)

  11. 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...

  12. 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...

  13. 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...

  14. 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...

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

    PubMed Central

    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

  16. 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...

  17. 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…

  18. 77 FR 18248 - Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-27

    ... HUMAN SERVICES Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention (CDC) publishes a list of information... in the Navajo Nation--New--Agency for Toxic Substances and Disease Registry (ATSDR) and Centers...

  19. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries

    PubMed Central

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  20. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries.

    PubMed

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  1. History and development of trauma registry: lessons from developed to developing countries

    PubMed Central

    Nwomeh, Benedict C; Lowell, Wendi; Kable, Renae; Haley, Kathy; Ameh, Emmanuel A

    2006-01-01

    Background A trauma registry is an integral component of modern comprehensive trauma care systems. Trauma registries have not been established in most developing countries, and where they exist are often rudimentary and incomplete. This review describes the role of trauma registries in the care of the injured, and discusses how lessons from developed countries can be applied toward their design and implementation in developing countries. Methods A detailed review of English-language articles on trauma registry was performed using MEDLINE and CINAHL. In addition, relevant articles from non-indexed journals were identified with Google Scholar. Results The history and development of trauma registries and their role in modern trauma care are discussed. Drawing from past and current experience, guidelines for the design and implementation of trauma registries are given, with emphasis on technical and logistic factors peculiar to developing countries. Conclusion Improvement in trauma care depends on the establishment of functioning trauma care systems, of which a trauma registry is a crucial component. Hospitals and governments in developing countries should be encouraged to establish trauma registries using proven cost-effective strategies. PMID:17076896

  2. 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...

  3. 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…

  4. THE RARE DISEASES CLINICAL RESEARCH NETWORK CONTACT REGISTRY UPDATE: FEATURES AND FUNCTIONALITY

    PubMed Central

    Richesson, Rachel; Sutphen, Rebecca; Shereff, Denise; Krischer, Jeff

    2013-01-01

    The Rare Diseases Clinical Research Network (RDCRN) Contact Registry has grown in size and scope since it was first reported in this journal in 2007. In this paper, we reflect on our seven years’ experience developing and expanding the RDCRN Contact Registry to include many more rare diseases. We present the functional and data requirements that motivated this registry, and the new features and policies that have been developed since. Given the high costs and long-term commitment required to build patient registries, the RDCRN Contact Registry experience represents a reasonable approach for identifying and cultivating potential research populations, with minimal resources and patient burden. The basic model of a patient-reported registry has not changed since our 2007 report, but the number of diseases has grown from 42 to 201, and the types of information that are exchanged with participants has expanded. A patient-directed information-sharing feature has been added to reduce barriers to communication between investigators and patients affected by rare and genetic diseases. As specific data and research needs arise, the Contact Registry can be leveraged to access needed data or to solicit patients for particular research opportunities. This multiple-disease registry is scalable, expandable, and standards-driven, and has become a model for clinical and translational research across rare and many other diseases. PMID:22405970

  5. 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... 16 Commercial Practices 1 2010-01-01 2010-01-01 false Fee for access to the National Do Not Call... OF CONGRESS TELEMARKETING SALES RULE § 310.8 Fee for access to the National Do Not Call Registry....

  6. 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

  7. Using software agents to maintain autonomous patient registries for clinical research.

    PubMed Central

    Murphy, S. N.; Rabbani, U. H.; Barnett, G. O.

    1997-01-01

    A software agent is an application that can function in an autonomous and intelligent fashion. We have used mobile software agents to maintain clinicians' patient research databases (patient registries). Agents were used to acquire data from the clinician and place it into the registries, copy data from hospital databases into the registries, and report data from the registries. The agents were programmed with the intelligence to navigate through complex network security, interact with legacy systems, and protect themselves from various forms of failure at multiple levels. To maximize the separation between our system and the hospital information infrastructure we often used Java, a platform-independent language, to program and distribute our software agents. By using mobile agents, we were able to distribute the computing time required by these applications to underutilized host machines upon which the registries could be maintained. PMID:9357591

  8. Establishing a National Medical Device Registry in Saudi Arabia: Lessons Learned and Future Work.

    PubMed

    Al-Surimi, Khaled; Househ, Mowafa; Almohandis, Essam; Alshagathrh, Fahd

    2015-01-01

    Medical device evaluation presents several unique challenges due to the great diversity and complexity of medical devices and their rapid technological evolution. There has been a variety of work conducted on the development of disease based registries and health surveillance systems in Saudi Arabia. However, the progress of medical device registry systems and post-market medical device surveillance systems remains in its infancy in Saudi Arabia and within the region. In 2007, a royal decree assigned the responsibility for regulating medical devices to the Saudi Food and Drug Authority (SFDA). Soon afterwards, the SFDA established the Medical Devices National Registry (MDNR) to house medical device information relating to manufacturers, agents, suppliers and end-users. The aim of this paper is to provide an overview on the Medical Device National Registry (MDNR) in Saudi Arabia and describe the current experience and future work of establishing a comprehensive medical device registry and post-market surveillance system in Saudi Arabia. PMID:26152943

  9. Can adherence to antihypertensive therapy be used to promote adherence to statin therapy?

    PubMed Central

    Chapman, Richard H; Pelletier, Elise M; Smith, Paula J; Roberts, Craig S

    2009-01-01

    Objective: To compare adherence with statin therapy in patients switching to single-pill amlodipine besylate/atorvastatin calcium with patients adding a separate statin to their amlodipine regimen. Methods: We identified hypertensive patients prescribed amlodipine who switched to amlodipine/atorvastatin (switch) or added a statin to their amlodipine regimen (add-on) from July 2004 to June 2007. Propensity score matching (1 switch:3 add-on) was applied based on ‘nearest neighbor’ approach. The primary adherence measure was patients with proportion of days covered (PDC) ≥0.80 at 180 days; secondary measures included mean PDC and persistence. A sensitivity analysis was performed, accounting for total statin/amlodipine exposure. Results: Among 4556 matched patients (n = 1139 switch; n = 3417 add-on), mean age was 53.9 years and 52.1% were male. After 180 days, adherence with statin therapy was higher for the switch vs add-on cohort (50.8% vs 44.3%; P < 0.001). After adjusting for pre-index amlodipine adherence, the switch cohort was more likely to be adherent than the add-on cohort (odds ratio: 1.64 [95% confidence interval: 1.42 to 1.89]). Persistence was higher in the switch than the add-on cohort (127.6 vs 117 days; P < 0.001). Conclusion: Hypertensive patients taking amlodipine who initiated statin therapy via single-pill amlodipine/atorvastatin were more likely to remain adherent to their statin than patients adding a separate statin to their antihypertensive regimen. PMID:19936170

  10. 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

  11. 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". PMID:19466739

  12. European echinococcosis registry: human alveolar echinococcosis, Europe, 1982-2000.

    PubMed

    Kern, Petra; Bardonnet, Karine; Renner, Elisabeth; Auer, Herbert; Pawlowski, Zbigniew; Ammann, Rudolf W; Vuitton, Dominique A; Kern, Peter

    2003-03-01

    Surveillance for alveolar echinococcosis in central Europe was initiated in 1998. On a voluntary basis, 559 patients were reported to the registry. Most cases originated from rural communities in regions from eastern France to western Austria; single cases were reported far away from the disease-"endemic" zone throughout central Europe. Of 210 patients, 61.4% were involved in vocational or part-time farming, gardening, forestry, or hunting. Patients were diagnosed at a mean age of 52.5 years; 78% had symptoms. Alveolar echinococcosis primarily manifested as a liver disease. Of the 559 patients, 190 (34%) were already affected by spread of the parasitic larval tissue. Of 408 (73%) patients alive in 2000, 4.9% were cured. The increasing prevalence of Echinococcus multilocularis in foxes in rural and urban areas of central Europe and the occurrence of cases outside the alveolar echinococcosis-endemic regions suggest that this disease deserves increased attention. PMID:12643830

  13. [SPORTS-RELATED SUDDEN DEATH: LESSONS FROM THE FRENCH REGISTRY].

    PubMed

    Marijon, Eloi; Bougouin, Wulfran; Jouven, Xavier

    2015-09-01

    So far, sports-related sudden death has been mainly studied through young competitive athletes. The national sports-related sudden death French registry (2005-2010) is the first study evaluating sudden death during sports activities in the general population, estimating that approximately 1000 cases occur each year in France. The vast majority occurs among middle age men practicing recreational activities, with women presenting a very low risk (up to 30-fold lower) compared to men. Outcomes dramatically vary across districts with survival to hospital discharge from 0 to 50%. Those differences are mainly the result of major disparities between districts regarding cardiopulmonary resuscitation initiated by bystanders. Coronary artery disease remains the most frequent cardiovascular disease associated with such events. PMID:26619725

  14. On World Religion Adherence Distribution Evolution

    NASA Astrophysics Data System (ADS)

    Ausloos, Marcel; Petroni, Filippo

    Religious adherence can be considered as a degree of freedom, in a statistical physics sense, for a human agent belonging to a population. The distribution, performance and life time of religions can thus be studied having in mind heterogeneous interacting agent modeling. We present a comprehensive analysis of 58 so-called religions (to be better defined in the main text) as measured through their number of adherents evolutions, between 1900 and 2000, - data taken from the World Christian Trends (Barrett and Johnson, "World Christian Trends AD 30 - AD 2200: Interpreting the Annual Christian Megacensus", William Carey Library, 2001): 40 are considered to be "presently growing" cases, including 11 turn overs in the twentieth century; 18 are "presently decaying", among which 12 are found to have had a recent maximum, in the nineteenth or the twentieth century. The Avrami-Kolmogorov differential equation which usually describes solid state transformations, like crystal growth, is used in each case in order to obtain the preferential attachment parameter introduced previously (Europhys Lett 77:38002, 2007). It is not often found close to unity, though often corresponding to a smooth evolution. However large values suggest the occurrence of extreme cases which we conjecture are controlled by so-called external fields. A few cases indicate the likeliness of a detachment process. We discuss a few growing and decaying religions, and illustrate various fits. Some cases seem to indicate the lack of reliability of the data, but others some marked departure from Avrami law. Whence the Avrami evolution equation might be surely improved, in particular, and somewhat obviously, for the decaying religion cases. We point out two major difficulties in such an analysis: (1) the "precise" original time of apparition of a religion, (2) the time at which there is a maximum number of adherents, both information being necessary for integrating reliably any evolution equation.

  15. 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

  16. The burn registry program in Iran - First report

    PubMed Central

    Karimi, H.; Momeni, M.; Motevalian, A.; Bahar, M.A.; Boddouhi, N.; Alinejad, F.

    2014-01-01

    Summary Burn injury is still a major problem in Iran, resulting in many reports which are usually dispersed, uncoordinated and probably unreliable. We created a burn registry comprised of a data entry program with 222 variables for each admitted burn patient. This program was established in August 2010 at the Iran University of Medical Sciences, Motahari Burn Hospital. We had 14,277 burn patients from August 2010 to August 2011, 877 of whom were admitted to the hospital. Of the patients, 65.9% were male and 34.1% were female. The age was 28.85 years (SD = 19.77). The most prevalent cause of burn was flame 78.5% (pipe propane gas 57.2; kerosene 19.9%). The mean total body surface area (TBSA) involvement was 23%. A total of 77.8% of patients were discharged with partial recovery, while mortality was 8.9%. The mean hospital stay was 14.63 days (SD =11.07). The program is designed to help understand the scope of burn injury in Iran, providing information on patients, etiology, and course of treatment. It also highlights differences between various parts of the country in terms of the causes and frequency of burn injuries. Moreover, the burn registry provides a basis for further research and surveys for treatment and preventive programs. Our results showed that, although Emergency Medical Services (EMS) staff are highly capable and well-trained, their coverage seems to be less than 50% and needs to be increased. Marriage status was shown to have no influence on the occurrence of burns, and among our patients, 57.0 % were poorly educated. PMID:26170796

  17. Current treatment practice and outcomes. Report of the hyponatremia registry.

    PubMed

    Greenberg, Arthur; Verbalis, Joseph G; Amin, Alpesh N; Burst, Volker R; Chiodo, Joseph A; Chiong, Jun R; Dasta, Joseph F; Friend, Keith E; Hauptman, Paul J; Peri, Alessandro; Sigal, Samuel H

    2015-07-01

    Current management practices for hyponatremia (HN) are incompletely understood. The HN Registry has recorded diagnostic measures, utilization, efficacy, and outcomes of therapy for eu- or hypervolemic HN. To better understand current practices, we analyzed data from 3087 adjudicated adult patients in the registry with serum sodium concentration of 130 mEq/l or less from 225 sites in the United States and European Union. Common initial monotherapy treatments were fluid restriction (35%), administration of isotonic (15%) or hypertonic saline (2%), and tolvaptan (5%); 17% received no active agent. Median (interquartile range) mEq/l serum sodium increases during the first day were as follows: no treatment, 1.0 (0.0-4.0); fluid restriction, 2.0 (0.0-4.0); isotonic saline, 3.0 (0.0-5.0); hypertonic saline, 5.0 (1.0-9.0); and tolvaptan, 4.0 (2.0-9.0). Adjusting for initial serum sodium concentration with logistic regression, the relative likelihoods for correction by 5 mEq/l or more (referent, fluid restriction) were 1.60 for hypertonic saline and 2.55 for tolvaptan. At discharge, serum sodium concentration was under 135 mEq/l in 78% of patients and 130 mEq/l or less in 49%. Overly rapid correction occurred in 7.9%. Thus, initial HN treatment often uses maneuvers of limited efficacy. Despite an association with poor outcomes and availability of effective therapy, most patients with HN are discharged from hospital still hyponatremic. Studies to assess short- and long-term benefits of correction of HN with effective therapies are needed. PMID:25671764

  18. 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

  19. Persisting with prevention: The importance of adherence for HIV prevention

    PubMed Central

    Weiss, Helen A; Wasserheit, Judith N; Barnabas, Ruanne V; Hayes, Richard J; Abu-Raddad, Laith J

    2008-01-01

    Background Only four out of 31 completed randomized controlled trials (RCTs) of HIV prevention strategies against sexual transmission have shown significant efficacy. Poor adherence may have contributed to the lack of effect in some of these trials. In this paper we explore the impact of various levels of adherence on measured efficacy within an RCT. Analysis We used simple quantitative methods to illustrate the impact of various levels of adherence on measured efficacy by assuming a uniform population in terms of sexual behavior and the binomial model for the transmission probability per partnership. At 100% adherence the measured efficacy within an RCT is a reasonable approximation of the true biological efficacy. However, as adherence levels fall, the efficacy measured within a trial substantially under-estimates the true biological efficacy. For example, at 60% adherence, the measured efficacy can be less than half of the true biological efficacy. Conclusion Poor adherence during a trial can substantially reduce the power to detect an effect, and improved methods of achieving and maintaining high adherence within trials are needed. There are currently 12 ongoing HIV prevention trials, all but one of which require ongoing user-adherence. Attention must be given to methods of maximizing adherence when piloting and designing RCTs and HIV prevention programmes. PMID:18620578

  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. 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

  2. The Complex Relation between Bisphosphonate Adherence and Fracture Reduction

    PubMed Central

    Patrick, Amanda R.; Brookhart, M. Alan; Losina, Elena; Schousboe, John T.; Cadarette, Suzanne M.; Mogun, Helen; Solomon, Daniel H.

    2010-01-01

    Context: Real-world adherence to bisphosphonate therapy is poor. Consistent data support a relation between medication adherence and fracture reduction, but relatively little attention has been paid to the effect of the method used to measure adherence on this relation or on the relation between adherence and specific fracture types. Objective: Our objective was to assess the relation between bisphosphonate adherence and the risk of hip, vertebral, distal forearm, and any fracture using different measures of adherence. Design: We conducted a cohort study using administrative claims data. Adherence was assessed in sequential 60-d periods. In models incorporating time-varying measures of adherence, the adjusted relation between adherence and fracture was examined using several methods for calculating the proportion of days covered (PDC). Patients: Patients included community-dwelling elderly enrolled in a Pennsylvania pharmaceutical assistance program and Medicare initiating an oral bisphosphonate for osteoporosis. Main Outcome Measures: Risk of hip, vertebral, distal forearm, and any osteoporotic fracture was assessed. Results: Fractures occurred at a rate of 43 per 1000 person-years among the 19,987 patients meeting study eligibility criteria. There was an inverse relation between adherence and fracture rate for all adherence measures and fracture types, excluding distal forearm fractures. High (80–100%) cumulative PDC was associated with a 22% reduction in overall fracture rate, a 23% reduction in hip fracture rate, and 26% reduction in vertebral fracture rate. Conclusions: We found a consistent relation between adherence with osteoporosis treatment and fracture reduction, regardless of method for measuring PDC. The similarity in results across adherence measures is likely due to the high correlation between them. PMID:20444916

  3. 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

  4. 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…

  5. Determinants of Medication Adherence to Topical Glaucoma Therapy

    PubMed Central

    Dreer, Laura E.; Girkin, Christopher; Mansberger, Steven L.

    2011-01-01

    Introduction/Purpose To determine the associations between medical, demographic, socioeconomic, and ocular factors and adherence to topical glaucoma ocular hypotensive therapy. Methods One-hundred and sixteen patients with ocular hypertension or open angle glaucoma from two tertiary glaucoma services participated in this prospective study. Adherence to ocular hypotensive therapy was measured using an electronic dose monitor (Travatan Dosing Aid, Alcon Laboratories Inc., Fort Worth, TX) and collected data at 3-months after enrollment. We used 3 different definitions of adherence: 1) Definition 1: the proportion of days taking the prescribed number of drops within 3 hours of the prescribed dosing time; 2) Definition 2: the proportion of days taking any drops within 3 hours of the prescribed dosing time; and 3) Definition 3: the proportion of days taking any drops within 6 hours of the prescribed dosing time. Univariate and multivariate models were used to determine the association between the three adherence definitions, medical, demographic, socioeconomic, and ocular factors at 3-month follow-up. The main outcome measures for this study were risk factors for poor objective medication adherence. Results Adherence, using Definition 1, Definition 2, and Definition 3, was 64%, 75%, and 80%, respectively. Age, total number of other eye diseases, and race were significantly associated with full treatment adherence (Definition 1), with race alone significantly predicting 11% of full treatment adherence. For Definition 2, age, income, level of education, and total number of eye diseases were significantly associated with partial adherence (3 hours), again race alone significantly predicted 15% of partial adherence (any drops within 3 hours). For Definition 3, race, income, level of education, and total number of other eye diseases significantly predicted partial adherence (any drops within 6 hours), both race and income predicted 19% of partial treatment adherence

  6. 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. PMID:27010870

  7. Adherence of oral streptococci to salivary glycoproteins.

    PubMed Central

    Murray, P A; Prakobphol, A; Lee, T; Hoover, C I; Fisher, S J

    1992-01-01

    We used an overlay method to study the ability of human salivary glycoproteins to serve as receptors for several strains of streptococci that colonize the oral cavity. Parotid and submandibular-sublingual salivas were collected as ductal secretions, separated by sodium dodecyl sulfate-polyacrylamide gel electrophoresis, and transferred to nitrocellulose membranes. The resulting blots were overlaid with [35S]methionine-labeled bacteria, and salivary components to which the bacteria bound were detected by autoradiography. Potential glycoprotein receptors were identified for 8 of the 16 strains tested. In three cases (Streptococcus sanguis 72-40 and 804 and Streptococcus sobrinus OMZ176), highly specific interactions with a single salivary component were detected. Removal of sialic acid residues from the low-molecular-weight salivary mucin prevented adherence of one of these strains (S. sanguis 72-40), suggesting that this saccharide either mediates binding or is a critical component of the receptor site. In the remaining five strains (Streptococcus gordonii G9B and 10558, S. sanguis 10556, and Streptococcus oralis 10557 and 72-41), interactions with multiple salivary components, including the low-molecular-weight salivary mucin, highly glycosylated proline-rich glycoproteins, and alpha-amylase, were detected. These results suggest that some oral streptococci can bind specifically to certain of the salivary glycoproteins. The interactions identified may play an important role in governing bacterial adherence and clearance within the oral cavity. Images PMID:1729194

  8. [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. PMID:26932222

  9. Problem of small numbers in reporting of cancer incidence and mortality rates in Indian cancer registries.

    PubMed

    Takiar, Ramnath; Nadayil, Deenu; Nandakumar, A

    2009-01-01

    The present paper examines the problem of small numbers (<20 cases) associated with many sites of cancers in Indian cancer registries. The cancer incidence data of 14 Population Based Cancer Registries for the periods of 2001-03 and 2004-05 were utilized for the analysis. Nine out of 14 registries had more than 50% of their sites being associated with small numbers while seven registries had 50% of their sites having as low as 5 cases. Sites associated with small numbers showed a lot of variation and significant differences in their incidence rates within two years duration which are not feasible. The percentage age distribution was also found to vary with different periods. The paper has effectively shown the effect of population size on incidence rates. For a registry of population size 300,000, the incidence rate of 6 can very well be unstable. There are many registries in the world with their population size less than 200,000. Even in the case of registries with high population (>or= 500,000) the practice is to report the cancer incidence by different ethnic groups with populations less than 200,000 and thereby introduce the problem of small numbers in reporting the incidences of various cancer sites. To overcome this problem, pooling of data over broad age groups or ten years age groups or 3 to 5 years periods is one immediate solution. PMID:19827889

  10. 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

  11. 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. PMID:25419602

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

    PubMed Central

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

    2015-01-01

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

  13. Comparative study on National Burn Registry in America, England, Australia and Iran

    PubMed Central

    Ajami, Sima; Lamoochi, Parisa

    2014-01-01

    Context: Iran experiences a high rate of burns accompanied by painful consequences, death and a lot of disabilities. In order to reduce the burden of this injury, some strategies such as designing and implementation of registration systems are essential. Aims: The aim of this study was to compare National Burn Registry in America, England, Australia and Iran. Materials and Methods: This study was comparative-descriptive in which data collected from the National Burn Registry of America, England, Australia and Iran studied in 2013. The study population included National Burn Registry of these countries and data was collected using raw data forms. Statistical Analysis Used: Data on each country was categorized according to objectives and comparisons took place using comparative tables. Finally, descriptive-theoretical analysis of the findings was performed. Results: National Security Agency and National Burn Repository in America, National Institute of Health and the Ministry of Health in England and the Department of Health and Senior in Australia are responsible for national burning registry. A seven-axial model was proposed for Iran's National Registry. America's registry system is broader than other countries due to its cooperation with Canada, Sweden and Asia. Conclusion: The aim of the Burn Registry System is to gather, store, edit, categorize, analyze and distribute all burns, injured data from all health care centers in a specific population and provide valuable information about the occurrence, time and regional distribution of burn injury. PMID:25540779

  14. 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

  15. 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

  16. 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

  17. Factors influencing adherence among older people with osteoarthritis.

    PubMed

    Loew, Laurianne; Brosseau, Lucie; Kenny, Glen P; Durand-Bush, Natalie; Poitras, Stéphane; De Angelis, Gino; Wells, George A

    2016-09-01

    This study aims to identify potential factors that could affect adherence and influence the implementation of an evidence-based structured walking program, among older adults diagnosed with knee osteoarthritis. A total of 69 participants with mild to moderate osteoarthritis of the knee fulfilled an online survey on potential factors that could affect their adherence to an evidence-based structured walking program. Adherence with regard to the influencing factors was explored using a logistic regression model. Results tend to show higher odds of adhering to the evidence-based walking program if the participants were supervised (more than 2.9 times as high), supported by family/friends (more than 3.7 times as high), and not influenced by emotional involvement (more than 11 times as high). The odds of adhering were 3.6 times lower for participants who indicated a change in their medication intake and 3.1 times lower for individuals who considered themselves as less physically active (95 % confidence interval (CI)). Our exploratory findings identified and defined potential adherence factors that could guide health professionals in their practice to better identify positive influences and obstacles to treatment adherence, which would lead to the adoption of a more patient-centered approach. A large-scale study is required to clearly delineate the key factors that would influence adherence. We addressed a new knowledge gap by identifying the main strategies to promote the long-term adherence of community-based walking program. PMID:26646111

  18. 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. PMID:23168317

  19. Adherence in the CAPRISA 004 Tenofovir Gel Microbicide Trial

    PubMed Central

    Mansoor, Leila E

    2014-01-01

    High adherence is key to microbicide effectiveness. Here we provide a description of adherence interventions and the adherence rates achieved in the CAPRISA 004 Tenofovir Gel Trial. Adherence support for the before-and-after dosing strategy (BAT 24) was provided at enrolment and at each monthly study visit. This initially comprised individual counselling and was replaced midway by a structured theory-based adherence support program (ASP) based on motivational interviewing. The 889 women were followed for an average of 18 months and attended a total of 17031 monthly visits. On average women reported 5 sex acts and returned 5.9 empty applicators per month. The adherence rate based on applicator count in relation to all reported sex acts was 72.2% compared to the 82.0% self-reported adherence during the last sex act. Adherence support activities, which achieve levels of adherence similar to or better than those achieved by the CAPRISA 004 ASP, will be critical to the success of future microbicide trials. PMID:24643315

  20. Adherence to antiretroviral therapy: are we doing enough?

    PubMed

    Read, T; Mijch, A; Fairley, C K

    2003-01-01

    Adherence to antiretroviral therapy is a powerful predictor of response to therapy. For optimal antiretroviral therapy response, individuals need to take more than 95% of their prescribed medication. The most widely used method for measuring adherence is self-report of the number of missed doses and this should be done at every clinic visit. There are several well-recognized predictors of poor adherence, such as illicit drug use, depression, limited knowledge or ambivalence about starting treatment. Adherence can be improved by addressing these issues or through other means such as pill boxes or electronic reminders. PMID:12752896

  1. Comparative adherence of granulocytes to endothelial monolayers and nylon fiber.

    PubMed

    MacGregor, R R; Macarak, E J; Kefalides, N A

    1978-03-01

    Adherence of granulocytes to tissue culture monolayers of endothelium averaged 26.2 +/- 1.3% SEM, which was similar to their adherence on 50-mg nylon fiber columns (27.7 +/- 3.6%). In contrast, adherence to epithelial cells, fibroblasts, kidney cells, and plastic Petri dishes without monolayers was only 12.4, 9.9, 11.1, and 4.3%, respectively. Cyclic nucleotides and adherence-modifying plasma factors induced changes of adherence to endothelium similar to those in nylon fiber columns. Adherence of granulocytes in whole blood was the same as for purified granulocytes in Hank's balanced salt solution. Exposure of endothelial monolayers to 0.18% trypsin for 10 min reduced subsequent granulocyte adherence to 25.2% of control values. Incubation of trypsin-treated monolayers with nutrient medium for 4 h did not improve adherence, but values returned to normal or above by 24 h, with or without serum proteins present in the nutrient medium. The similarity of granulocyte adherence to nylon fiber and to endothelial monolayers in vitro suggests that results with the nylon fiber assay reflect in vivo granulocyte-endothelium interaction. Furthermore, the endothelial monolayer offers a new model for studying this cell-cell relationship in vitro. PMID:641148

  2. Assessing adherence in Thai patients taking combination antiretroviral therapy.

    PubMed

    Kerr, S J; Avihingsanon, A; Putcharoen, O; Chetchotisakd, P; Layton, M; Ubolyam, S; Ruxrungtham, K; Cooper, D A; Phanuphak, P; Duncombe, C

    2012-03-01

    In settings where medications and viral load (VL) monitoring are limited by cost, clinicians need reliable ways to assess patient adherence to therapy. We assessed sensitivity and specificity of two self-reported adherence tools (a visual analogue scale [VAS] and the CASE [Center for Adherence Support Evaluation] adherence index), against a standard of detectable VL, with 288 patients from three sites in Thailand. We also assessed predictors of non-adherence. The sensitivity and specificity of the VAS <95% and CASE adherence index ≤11 against a VL >50 copies/mL were 26% and 90%, 19% and 95%, respectively. Against a VL ≥1000 copies/mL sensitivities increased to 55% and 36%, respectively, and specificities were unchanged. Attending a clinic not staffed by HIV specialists (odds ratio [OR] 3.14; 95% confidence interval [CI] 1.19-8.34) and being educated to primary school level or less (OR 2.24; 95% CI 1.01-4.94) were associated with self-reported adherence <95% on the VAS in multivariate analysis. Adherence assessed by the VAS was a more accurate predictor of detectable VL. Policy-makers in resource-limited settings should ensure that treatment centres are staffed with well-trained personnel aware of the importance of good patient adherence. PMID:22581867

  3. Understanding patient management: the need for medication adherence and persistence.

    PubMed

    Chia, Yc

    2008-01-01

    Poor patient adherence to medication is one of the major factors contributing to poor disease control, in particular in asymptomatic chronic diseases like hypertension and dyslipidaemia. The physical and economic burden on patients and the health care system as a result of non-adherence is great. It is estimated that poor adherence to hypertension medication accounts for as many as 7.1 million preventable deaths annually. Hence recognising and identifying non-adherence is the first step to addressing this problem. Medication adherence can be measured in various ways including self-report to electronic monitoring. In order to be more successful in managing non-adherence, attention must be paid to barriers to adherence, namely the interplay of patient factors, the health care providers themselves and the health care system itself. Taking these into account will probably have the greatest impact on improving medication adherence. Consequently strategies to help overcome these barriers are of paramount importance. Some of these strategies will include education of patients, improving communication between patients and health care providers, improving dose scheduling, providing drugs with less adverse effects, and improving accessibility to health care. Poor mediation adherence continues to be a huge challenge. While the patient is ultimately responsible for the taking of medication, good communication, involving the patient in decision making about their care and simplifying drug regimens go a long way in improving it. PMID:25606104

  4. Pharmacists' perspectives on monitoring adherence to treatment in Cystic Fibrosis.

    PubMed

    Mooney, Karen; Ryan, Cristín; Downey, Damian G

    2016-04-01

    Background Cystic Fibrosis (CF) management requires complex treatment regimens but adherence to treatment is poor and has negative health implications. There are various methods of measuring adherence, but little is known regarding the extent of adherence measurement in CF centres throughout the UK and Ireland. Objective To determine the adherence monitoring practices in CF centres throughout the UK and Ireland, and to establish CF pharmacists' views on these practices. Setting UK and Ireland Cystic Fibrosis Pharmacists' Group's annual meeting (2014). Methods A questionnaire was designed, piloted and distributed to pharmacists attending the UK and Ireland Cystic Fibrosis Pharmacists' Group's annual meeting (2014). The main outcome measures were the methods of inhaled/nebulised antibiotic supply and the methods used to measure treatment adherence in CF centres. The questionnaire also ascertained the demographic information of participating pharmacists. Closed question responses were analysed using descriptive statistics. Open questions were analysed using content analysis. Results Twenty-one respondents (84 % response) were included in the analysis and were mostly from English centres (66.7 %). Detailed records of patients receiving their inhaled/nebulised antibiotics were lacking. Adherence was most commonly described to be measured at 'every clinic visit' (28.6 %) and 'occasionally' (28.6 %). Patient self-reported adherence was the most commonly used method of measuring adherence in practice (90.5 %). The availability of electronic adherence monitoring in CF centres did not guarantee its use. Pharmacists attributed an equal professional responsibility for adherence monitoring in CF to Consultants, Nurses and Pharmacists. Seventy-six percent of pharmacists felt that the current adherence monitoring practices within their own unit were inadequate and associated with the absence of sufficient specialist CF pharmacist involvement. Many suggested that greater

  5. Sexual relationships outside primary partnerships and abstinence are associated with lower adherence and adherence gaps: data from the Partners PrEP Ancillary Adherence Study

    PubMed Central

    Kintu, Alexander; Hankinson, Susan E.; Balasubramanian, Raji; Ertel, Karen; Tumwesigye, Elioda; Bangsberg, David R.; Haberer, Jessica E.

    2015-01-01

    Objective To assess the role of sexual relationships on levels and patterns of adherence to medication for pre-exposure prophylaxis (PrEP) against HIV. Methods We enrolled 1,147 HIV-negative individuals in long-term serodiscordant relationships at three sites in Uganda from the Partners PrEP Study- a randomized placebo-controlled trial of daily oral tenofovir and emtricitabine/tenofovir. We used generalized estimation equations to assess the effects of sexual relationships on low adherence (<80%) and on gaps in adherence. Results Fifty-three percent were male, 51% were 18-34 years and 24% were polygamous. Participants who reported sex in the past month with someone other than their primary partner and with <100% condom use were more than twice as likely to have low adherence (aOR 2.48, 95% CI: 1.70-3.62) compared to those who had sex with only their primary partners and 100% condom use. Using the same reference group, those who abstained from sex in the previous month had 30% increased odds of low adherence (aOR 1.30, 95% CI: 1.05-1.62), and participants in non-polygamous marriages who reported sex with both their primary and other partners and <100% condom use were almost twice as likely to be low adherers (aOR 1.76, 95% CI: 1.01-3.08). At least one 72-hour gap in adherence was seen in 598 participants (54.7%); 23.2% had at least one one-week gap. Conclusions Risk of low overall adherence was higher in participants who reported sex outside primary partnerships and suboptimal condom use, as well as in those who abstained from sex. Adherence gaps were common, potentially creating risk for HIV acquisition. PMID:25942457

  6. Improving adherence to antiretroviral therapy in sub-Saharan African HIV-positive populations: an enhanced adherence package.

    PubMed

    Kunutsor, S; Walley, J; Muchuro, S; Katabira, E; Balidawa, H; Namagala, E; Ikoona, E

    2012-01-01

    With the increasing access to antiretroviral therapy in sub-Saharan African HIV-positive populations, it is important to find additional simple, effective, and feasible methods of improving and maintaining adequately high levels of adherence. In this study, we undertook the development, testing, implementation, and evaluation of various adherence support interventions at four sites in Uganda. A one-group pre- and post-intervention design was employed under routine operational conditions. Various adherence support strategies were identified, adapted, and developed. These strategies which included a combination of elements such as counseling, group education, leaflets, late attendee tracing, and adherence diaries was implemented for an antiretroviral treatment cohort which had baseline levels of adherence measured preintervention. Follow-up was from August 2009 through August 2010. Mean adherence and proportions of clients achieving adherence levels of 95% and above were determined at end of follow-up. Of the 967 participants enrolled, 856 (88.5%) completed follow-up. A before-and-after comparison of outcomes demonstrated that mean adherence (95% confidence interval [CI]) improved statistically significant from baseline following implementation of the interventions (97.4% [96.9-97.9%] to 99.1% [99.0-99.3%], P=0.001). There was also a significant difference between proportions with optimal (≥ 95%) and suboptimal adherence (<95%) pre- and post-intervention (7.0% difference, 95% CI: 4.6-9.4%, P<0.001). We conclude that additional adherence strategies (including counseling, group education, leaflets, late attendee tracing, and adherence diaries) can substantially improve and maintain high levels of treatment adherence in the long term. Health systems in sub-Saharan African countries should consider integrating these elements into their treatment programs for HIV/AIDS. PMID:22621288

  7. Provider-Focused Intervention Increases Adherence-Related Dialogue, But Does Not Improve Antiretroviral Therapy Adherence in Persons with HIV

    PubMed Central

    Wilson, Ira B.; Laws, M. Barton; Safren, Steven A.; Lee, Yoojin; Lu, Minyi; Coady, William; Skolnik, Paul R.; Rogers, William H.

    2010-01-01

    Background Physicians' limited knowledge of patients' antiretroviral adherence may reduce their ability to perform effective adherence counseling. Methods We conducted a randomized, cross-over study of an intervention to improve physicians' knowledge of patients' antiretroviral adherence. The intervention was a report given to the physician prior to a routine office visit that included data on: MEMS and self-reported data on antiretroviral adherence, patients' beliefs about antiretroviral therapy, reasons for missed doses, alcohol and drug use, and depression. We audio-recorded one intervention and one control visit for each patient to analyze differences in adherence related dialogue. Results 156 patients were randomized, and 106 completed all 5 study visits. Paired audio-recorded visits were available for 58 patients. Using a linear regression model that adjusted for site and baseline MEMS adherence, adherence following intervention visits did not differ significantly from control visits (2.0% higher, p=0.31, 95% CI -1.95% – 5.9%). There was a trend toward more total adherence-related utterances (median of 76 vs. 49.5, p=0.07) and a significant increase in utterances about the current regimen (median of 51.5 vs. 32.5, p=0.0002) in intervention compared with control visits. However less than 10% of adherence-related utterances were classified as “problem solving” in content, and one third of physicians' problem solving utterances were directive in nature. Conclusions Receipt of a detailed report prior to clinic visits containing data about adherence and other factors did not improve patients' antiretroviral adherence. Analyses of patient-provide dialogue suggests that providers who care for persons with HIV may benefit from training in adherence counseling techniques. PMID:20048680

  8. National Registry on Cardiac Electrophysiology 2007 and 2008.

    PubMed

    da Silva, Manuel Nogueira; Bonhorst, Daniel; de Sousa, João

    2009-11-01

    Clinical electrophysiology remains one of the most dynamic areas of cardiology, with continuing developments in equipping centers with more modern mapping and navigation systems. This has enabled an increase in the number and variety of interventions, resulting in significant improvements in results of therapeutic ablation of arrhythmias and prevention of sudden cardiac death. In this phase of transition towards implementation of a computerized national registry with nationwide data transmitted via the internet, publication of the registry in its previous form, although requiring more work, still seems justified, in order to appraise and disseminate qualitative and quantitative developments in this activity and enable comparisons with what is being done internationally, assess the centers' training capacity and inform national and European health authorities of the activities and real needs in this sector. The authors analyze the number and type of procedures performed during 2007 and 2008 based on a survey sent to centers performing diagnostic and interventional electrophysiology (16 centers in 2007 and 2008) and/or implanting cardioverter-defibrillators (ICDs) (19 centers in 2007 and 21 in 2008). Compared to 2006, one more center began interventional electrophysiology in 2007 and two centers began implanting ICDs in 2008. In the years under review, 2060 electrophysiological studies were performed in 2007 and 2007 were performed in 2008, of which 74 and 79.5% respectively were followed by therapeutic ablation, making totals of 1523 and 1596 ablations (increases of 10.7 and 4.6% from previous years). Atrioventricular nodal reentrant tachycardia was the main indication for ablation (28.4 and 28.7%), followed by accessory pathways (26.8 and 25.4%), atrial flutter (20.8 and 19.7%), atrial fibrillation (13.9 and 14.6%), ventricular tachycardia (4.7 and 5.1%), atrial tachycardia (2.8 and 2.6%) and atrioventricular junction ablation (2.7 and 3.9%). Regarding ICDs, a

  9. Elastohydrodynamics of contact in adherent sheets

    NASA Astrophysics Data System (ADS)

    Carlson, Andreas; Mandre, Shreyas; Mahadevan, L.

    2015-11-01

    The dynamics of contact between a thin elastic film and a solid arises in many scientific and engineering applications, from the simple saran-wrap to cellular adhesion to grounding lines in ice sheets. Here, we use a mathematical description of the multi-scale processes associated with microscopic adhesion, fluid flow and elastic thin film deformation to deduce the dynamics of the onset of adhesion, as well as the speed and the shape of the adhesion zone. Our analysis is consistent with prior experimental observations, provides new testable predictions for the shape, size and dynamics of adherent contact in thin sheets and in addition provides a broadly applicable prescription for the boundary conditions at elastic contact lines.

  10. Non-adherence to topical treatments for actinic keratosis

    PubMed Central

    Shergill, Bav; Zokaie, Simon; Carr, Alison J

    2014-01-01

    Background There is limited information on the patterns of use, adherence rates, and factors that impact adherence with topical treatments for actinic keratosis (AK). Objectives To establish patterns of use and adherence with topical treatments for AK and to identify treatment-related factors that impact on adherence. Methods A community-based, cross-sectional study was performed using a standardized questionnaire completed online or via telephone interview. Patients were stratified according to the presence of AK lesions on the scalp and/or other extremities; and presence of scarring resulting from treatment. Results This study included 305 patients with AK who were currently using a patient-applied topical therapy for AK or had used one within the previous 12 months. In total, 88% (n = 268/305) of patients were either non-adherent, non-persistent or both non-adherent and non-persistent to topical therapy. Duration of treatment was associated with increasing rates of non-adherence (adjusted odds ratio [OR]; for treatment durations greater than 4 weeks, 2.2, P < 0.01): 52% of patients were non-adherent with 3–4 week treatment duration; 69% of patients with 4–8 week treatment duration; and 71% of patients with 6–12 week treatment duration. There were similar increases in non-persistence with increasing treatment duration (adjusted OR; for treatment durations greater than 4 weeks, 2.1, P < 0.05). Conclusion This study found high rates of non-adherence and non-persistence in patients with AK. Duration of treatment was a significant factor contributing to non-adherence and non-persistence to topical treatments. Patient-applied topical therapies that require less frequent application and have shorter treatment duration may be associated with improved adherence rates. PMID:24379656

  11. Adherence to immunosuppression: a prospective diary study.

    PubMed

    Gordon, E J; Prohaska, T R; Gallant, M P; Siminoff, L A

    2007-12-01

    Immunosuppression adherence among kidney transplant recipients is essential for graft survival. However, nonadherence is common, jeopardizing graft survival. Besides skipping dosages, little is known about other forms of medication nonadherence and their underlying reasons. This study sought to examine patients' extent of medication adherence over time and reasons for nonadherence. Thirty-nine new kidney transplant recipients were asked to complete a month-long medication-taking diary that included reporting medication nonadherence such as skipped medications, medications taken early or late, taking dosages greater or less than prescribed, and the reason for each occurrence of nonadherence. Of the 20 (51%) patients who completed the diary, 11 (55%) reported at least 1 form of nonadherence. Eleven patients reported taking their immunosuppression at least 1 hour later than the prescribed time, 1 patient reported skipping medication, but no patients reported changing the dosage on their own. Immunosuppression was taken on average 1.5 hours after the prescribed time. Of those patients who took their medications late, there were on average 3.1 occasions of taking it late. The most common reasons for this behavior included health care-related issues, followed by oversleeping, being away from home, work-related barriers, and forgetting. The majority of kidney transplant recipients took medications later than prescribed during 1 month. Future research should determine the clinical impact on graft function of late administration of immunosuppression. Interventions should be designed to better assist kidney recipients with taking medications on time, especially when they are away from home. PMID:18089327

  12. 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

  13. Complete ascertainment of Parkinson disease in the Swedish Twin Registry

    PubMed Central

    Wirdefeldt, Karin; Gatz, Margaret; Bakaysa, Stephanie L.; Fiske, Amy; Flensburg, Måns; Petzinger, Giselle M.; Widner, Håkan; Lew, Mark F.; Welsh, Mickie; Pedersen, Nancy L.

    2008-01-01

    This report describes the ascertainment of Parkinson disease (PD) in all individuals aged 50 years or older (49,814 individuals) from the Swedish Twin Registry. In phase one of the study, all twins were screened for PD using telephone interviews, with a response rate of 72.7%. In phase two, twins with suspected PD were re-contacted to exclude anyone from follow-up who reported parkinsonian symptoms due to diseases other than PD. In the third phase, in-person clinical evaluations were completed for twins who were still considered PD suspects after phase two and for a sample of co-twins. During the clinical evaluations, we also collected blood samples and information about a variety of environmental exposures. Overall prevalence rate for PD was 496 per 100,000 individuals. Among the 132 PD cases identified, there were only three concordant twin pairs. In total 7.2% of PD cases reported a first degree relative with PD. PMID:17532098

  14. 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.

  15. 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.

  16. 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...

  17. 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

  18. 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

  19. 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.

  20. Development of adherence metrics for caloric restriction interventions

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Objective measures are needed to quantify dietary adherence during caloric restriction (CR) while participants are freeliving. One method to monitor adherence is to compare observed weight loss to the expected weight loss during a prescribed level of CR. Normograms (graphs) of expected weight loss c...

  1. Development of adherence metrics for caloric restriction interventions

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Objective measures are needed to quantify dietary adherence during caloric restriction (CR) while participants are freeliving. One method to monitor adherence is to compare observed weight loss to the expected weight loss during a prescribed level of CR. Normograms (graphs)of expected weight loss ca...

  2. Adherence to health regimens among frequent attenders of Finnish healthcare

    PubMed Central

    Hirsikangas, Sari; Kanste, Outi; Korpelainen, Juha; Kyngäs, Helvi

    2016-01-01

    Objectives The aim of the study was to describe adherence to health regimens and the factors associated with it among adult frequent attenders (FAs). Design This was a cross-sectional study. The study sample consisted of 462 healthcare FAs in 7 municipal health centres in northern Finland. An FA is a person who has had 8 or more outpatient visits to a GP (in a health centre) or 4 or more outpatient visits to a university hospital during 1 year. The main outcome was self-reported adherence to health regimens. Results Of the FAs, 82% adhered well to their health regimens. Carrying out self-care, medical care and feeling responsible for self-care were the most significant predictors to good adherence in all models. No significant differences in adherence were found in male and female subjects, age groups or educational levels. Support from healthcare providers and support from relatives were not significant predictors of good adherence. Conclusion FAs in Finland adhere well to health regimens and exceptionally well to medication. Variables that predict the best adherence of FAs to health regimens are carrying out self-care, receiving medical care and feeling responsible for self-care. PMID:26996780

  3. Variation in guideline adherence in intrauterine insemination care.

    PubMed

    Haagen, Esther C; Nelen, Willianne L D M; Grol, Richard P T M; Braat, Didi D M; Hermens, Rosella P M G; Kremer, Jan A M

    2010-04-01

    Health-care delivery according to clinical practice guidelines is thought to be critical in achieving optimal outcomes. This study aimed to assess the extent to which practice performance in intrauterine insemination (IUI) care is consistent with guideline recommendations and to evaluate the association between guideline adherence and outcome of IUI care. In a retrospective cohort study, 1100 infertile couples who underwent IUI treatment at 10 Dutch hospitals were asked to grant access to their medical record for assessment of guideline adherence using 25 systematically developed guideline-based performance indicators. A total of 558 couples who started 2334 IUI cycles participated. Guideline adherence regarding 20 process and five structure aspects of IUI care was often substandard and varied considerably between hospitals. Out of 10 possible associations investigated, guideline adherence regarding sperm quality and guideline adherence regarding the total number of IUI cycles were associated with improved ongoing pregnancy rates after IUI. Thus, guideline adherence in IUI care is far from optimal and varies substantially between hospitals. As associations between guideline adherence and ongoing pregnancy after IUI were mainly non-significant, further research is needed to evaluate associations between guideline adherence and other outcomes of IUI care besides ongoing pregnancy, such as patient safety and cost effectiveness. PMID:20129823

  4. Home-Based Resistance Training: Predictors of Participation and Adherence.

    ERIC Educational Resources Information Center

    Jette, Alan M.; Rooks, Dan; Lachman, Margie; Lin, Ting H.; Levenson, Claudia; Heislein, Diane; Giorgetti, Marie M.; Harris, B. A.

    1998-01-01

    Identifies factors associated with exercise participation and adherence in a sample of sedentary, functionally limited, community-dwelling adults ages 60 to 94 who participated in a home-based resistance training program (N=102). Results show that psychological factors were most important to adherence to the home-based program. (Author/MKA)

  5. 47 CFR 5.113 - Adherence to program of research.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 47 Telecommunication 1 2012-10-01 2012-10-01 false Adherence to program of research. 5.113 Section 5.113 Telecommunication FEDERAL COMMUNICATIONS COMMISSION GENERAL EXPERIMENTAL RADIO SERVICE (OTHER THAN BROADCAST) Technical Standards and Operating Requirements § 5.113 Adherence to program of research. (a) The program of experimentation as...

  6. 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...

  7. 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....

  8. 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...

  9. 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…

  10. 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…

  11. 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.

  12. Medication adherence issues in patients treated for COPD

    PubMed Central

    Restrepo, Ruben D; Alvarez, Melissa T; Wittnebel, Leonard D; Sorenson, Helen; Wettstein, Richard; Vines, David L; Sikkema-Ortiz, Jennifer; Gardner, Donna D; Wilkins, Robert L

    2008-01-01

    Although medical treatment of COPD has advanced, nonadherence to medication regimens poses a significant barrier to optimal management. Underuse, overuse, and improper use continue to be the most common causes of poor adherence to therapy. An average of 40%–60% of patients with COPD adheres to the prescribed regimen and only 1 out of 10 patients with a metered dose inhaler performs all essential steps correctly. Adherence to therapy is multifactorial and involves both the patient and the primary care provider. The effect of patient instruction on inhaler adherence and rescue medication utilization in patients with COPD does not seem to parallel the good results reported in patients with asthma. While use of a combined inhaler may facilitate adherence to medications and improve efficacy, pharmacoeconomic factors may influence patient’s selection of both the device and the regimen. Patient’s health beliefs, experiences, and behaviors play a significant role in adherence to pharmacological therapy. This manuscript reviews important aspects associated with medication adherence in patients with COPD and identifies some predictors of poor adherence. PMID:18990964

  13. 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

  14. 47 CFR 5.113 - Adherence to program of research.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 47 Telecommunication 1 2010-10-01 2010-10-01 false Adherence to program of research. 5.113 Section 5.113 Telecommunication FEDERAL COMMUNICATIONS COMMISSION GENERAL EXPERIMENTAL RADIO SERVICE (OTHER THAN BROADCAST) Technical Standards and Operating Requirements § 5.113 Adherence to program of...

  15. Method of producing adherent metal oxide coatings on metallic surfaces

    DOEpatents

    Lane, Michael H.; Varrin, Jr., Robert D.

    2001-01-01

    Provided is a process of producing an adherent synthetic corrosion product (sludge) coating on metallic surfaces. The method involves a chemical reaction between a dry solid powder mixture of at least one reactive metal oxide with orthophosphoric acid to produce a coating in which the particles are bound together and the matrix is adherent to the metallic surface.

  16. 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. PMID:26917347

  17. 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…

  18. 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…

  19. 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.

  20. 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…

  1. 47 CFR 5.113 - Adherence to program of research.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 47 Telecommunication 1 2011-10-01 2011-10-01 false Adherence to program of research. 5.113 Section 5.113 Telecommunication FEDERAL COMMUNICATIONS COMMISSION GENERAL EXPERIMENTAL RADIO SERVICE (OTHER THAN BROADCAST) Technical Standards and Operating Requirements § 5.113 Adherence to program of research. (a) The program of experimentation as...

  2. 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. PMID:24034448

  3. 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....

  4. 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…

  5. 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…

  6. Associations between patient factors and medication adherence: A Jordanian experience

    PubMed Central

    Basheti, Iman A.; Hait, Sami Saqf El; Qunaibi, Eyad A.; Aburuz, Salah; Bulatova, Nailya

    2015-01-01

    Objective: To explore the effect of patient characteristics and health beliefs on their medication adherence. Methods: Patients (n=167) with chronic conditions (mean age 58.9; SD=13.54, 53% males) were recruited from March 2009- to March 2010 using a cross sectional study design. Data collected included patients’ demographics, medical conditions, medications therapeutic regimen, frequency of physician visits and health beliefs. Patient self-reported adherence to medications was assessed by the researcher using a validated and published scale. Treatment related problems (TRPs) were evaluated for each patient by competent clinical pharmacists. Associations between patient characteristics/health beliefs with adherence were explored. Results: About half of the patients (46.1%) were non-adherent. A significant association was found between lower adherence and higher number of disease states (p<0.001), higher number of medications (p=0.001), and higher number of identified TRPs (p = 0.003). Patient adherence was positively affected by older age, higher educational level, and higher number of physician visits per month, while it was negatively affected by reporting difficulties with getting prescription refills on time. Conclusion: This study identified different factors that may negatively affect adherence, including higher number of medications and disease states, higher number of identified TRPs and inability to getting prescription refills on time. Hence, more care needs to be provided to patients with complex therapeutic regimens in order to enhance adherence. PMID:27011772

  7. Long-Term Adherence to Health Behavior Change

    PubMed Central

    Middleton, Kathryn R.; Anton, Stephen D.; Perri, Michal G.

    2016-01-01

    The utility of lifestyle-based health promotion interventions is directly impacted by participant adherence to prescribed behavior changes. Unfortunately, poor adherence to behaviors recommended in lifestyle interventions is widespread, particularly over the long-term; thus, the “adherence problem” represents a significant challenge to the effectiveness of these interventions. The current review provides an overview of the adherence problem and describes a theoretical framework through which the factors that impact adherence can be understood. To further understand the difficulties individuals face when adhering to health behavior changes, we focus our discussion on challenges associated with adherence to lifestyle behaviors recommended for weight loss and healthy weight management (i.e., reductions in dietary intake and increases in physical activity). We describe strategies that improve long-term adherence to health behaviors related to healthy weight management, including the provision of extended care, skills training, improving social support, and strategies specific to maintaining changes in dietary intake and physical activity. Finally, we discuss difficulties involved in implementing long-term weight management programs and suggest practical solutions for providers.

  8. 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…

  9. 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…

  10. Differences in Adherence and Non-Adherence Behaviour Patterns to Inhaler Devices Between COPD and Asthma Patients.

    PubMed

    Plaza, Vicente; López-Viña, Antolín; Entrenas, Luis Manuel; Fernández-Rodríguez, Concepción; Melero, Carlos; Pérez-Llano, Luis; Gutiérrez-Pereyra, Fernando; Tarragona, Eduard; Palomino, Rosa; Cosio, Borja G

    2016-10-01

    Differences between COPD and asthma may also differentially affect adherence to inhaled drugs in each disease. We aimed to determine differences in behaviour patterns of adherence and non-adherence to inhaled therapy between patients with COPD and patients with asthma using the Test of Adherence to Inhalers (TAI) questionnaire. A total of 910 patients (55% with asthma, 45% with COPD) participated in a cross-sectional multicentre study. Data recorded included sociodemographics, education level, asthma or COPD history, TAI score, the Asthma Control Test (ACT), the COPD Assessment Test (CAT) and spirometry. Asthma patients were statistically significant less adherents, 140 (28%) vs. 201 (49%), and the pattern of non-adherence was more frequently erratic (66.8% vs. 47.8%) and deliberate (47.2% vs. 34.1%) than COPD patients; however unwitting non-adherence was more frequently observed in COPD group (31.2% vs. 22.8%). Moreover, taking together all sample studied, only being younger than 50 years of age (OR 1.88 [95% CI: 1.26-2.81]) and active working status (OR 1.45 [95% CI: 1.00-2.09]) were risk factors for non-adherence in the multivariate analysis, while having asthma remained in the limits of the significance (OR 1.44 [95%CI: 0.97-2.14]). Even though non-adherence to inhalers is more frequently observed in asthma than in COPD patients and exhibited a different non-adherence patterns, these differences are more likely to be related to sociodemographic characteristics. However, differences in non-adherence patterns should be considered when designing specific education programmes tailored to each disease. PMID:26788620

  11. Symptom severity, self-reported adherence, and electronic pill monitoring in poorly adherent patients with bipolar disorder

    PubMed Central

    Sajatovic, Martha; Levin, Jennifer; Sams, Johnny; Cassidy, Kristin A; Akagi, Kouri; Aebi, Michelle E; Ramirez, Luis F; Safren, Steven A; Tatsuoka, Curtis

    2015-01-01

    Objectives This analysis of screening and baseline data from an ongoing trial examined self-report versus automated adherence monitoring and assessed the relationship between bipolar disorder (BD) symptoms and adherence in 104 poorly adherent individuals. Methods Adherence was measured with the Tablets Routine Questionnaire (TRQ) and the Medication Event Monitoring System (MEMS). Symptoms were measured with the Montgomery–Åsberg Depression Rating Scale (MADRS), the Young Mania Rating Scale (YMRS), and the Brief Psychiatric Rating Scale (BPRS). Results Mean age of the sample was 46.3 years [standard deviation (SD) = 9.41], with 72% (n = 75) women and 71% (n = 74) African American subjects. Adherence improved from screening to baseline with a mean missed drug proportion measured by TRQ of 61.43% (SD = 26.48) versus baseline mean of 46.61% (SD = 30.55). Mean proportion of missed medication using MEMS at baseline was 66.43% (SD = 30.40). Correlation between TRQ and MEMS was 0.47. Correlation between a single index drug and all BD medications was 0.95. Symptoms were generally positively correlated with TRQ (worse adherence = more severe symptoms), but in most instances was only at a trend level (p > 0.05) with the exception of correlation between baseline TRQ and MADRS and BPRS, which were positive (r = 0.20 and r = 0.21, respectively) and significant (p ≤ 0.05). Conclusions In patients with BD, monitoring increased adherence by 15%. MEMS identified 20% more non-adherence than self-report. Using a standard procedure to identify a single index drug for adherence monitoring may be one way to assess global adherence in patients with BD receiving polypharmacy treatment. Greater BD symptom severity may be a clinical indicator to assess for adherence problems. PMID:26529124

  12. 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

  13. National exposure registry: Tichloroethylene (TCE) subregistry (on CD-ROM). Data file

    SciTech Connect

    Not Available

    1995-01-01

    The 1994 National Exposure Registry: Trichloroethylene (TCE) Subregistry' contains data on approximately 4,000 persons and is the first CD-ROM product released in the National Exposure Registry Series. This CD-ROM is composed of three files: Demographics and Health, Mortality, and Environmental. The CD-ROM includes access software, the Statistical Export and Tabulation System (SETS). The TCE subregistry is one of three (dioxin and benzene subregistries are the other two). The National Exposure Registry was created in response to a mandate given in the Comprehensive Environmental Response, Compensation and Liability Act (CERCLA) of 1980 to the Agency for Toxic Substances and Disease Registry (ATSDR) to create a registry of persons exposed to hazardous substances. This mandate was reiterated in the Superfund Amendments and Reauthorization Act (SARA) of 1986. The National Exposure Registry is a database composed of names of persons, along with additional information on these persons, with documented exposure to specific chemicals. The purpose of the Registry is to aid in assessing the long-term health consequences of low-level, long-term exposure to environmental contaminants. One of the goals is to establish a database that will furnish the information needed to generate appropriate and valid hypotheses for future activities such as epidemiological studies. When supplemented with additional data, the combined file can then be used to carry out hypothesis-testing epidemiological investigations. The data collected for each member of the Registry include environmental levels, demographic information, smoking and occupational history, and self-reported responses to 25 general health status questions. The files for each chemical-specific subregistry are established at the time baseline data are collected and are updated and maintained by ATSDR on an ongoing basis (annually the first year, biennially thereafter).

  14. 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

  15. 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

  16. 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

  17. 76 FR 12969 - Campaign To Improve Poor Medication Adherence (U18)

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-09

    ... ] importance of good medication adherence, a vital first step toward improved adherence behavior and better... toward improved adherence behavior and better health outcomes. Relevance Inadequate medication adherence... behaviors to increase appropriate medication adherence and thus enhance health outcomes is an important...

  18. Medication Adherence and Treatment Satisfaction Among Renal Transplant Recipients.

    PubMed

    Alkatheri, Abdulmalik A; Albekairy, Abdulkareem M; Jarab, Anan; Bustami, Rami; Khalidi, Nabil; Alshaya, Abdulrahman; Bin Saleh, Khalid; Alraddadi, Sultan; Alharbi, Shmeylan; Vasudevan, Senthilvel; Alsayyari, Abdullah; Qandil, Amjad M

    2016-01-01

    BACKGROUND Evidence suggests that patients who are more satisfied with their treatment show better adherence with the prescribed therapy. Although there is valuable data about medication adherence among renal transplant recipients (RTRs), there is a limited literature about their treatment satisfaction and its relation to adherence. The aim of the present study was to investigate factors that can predict medication adherence and to explore the relationship between treatment satisfaction and medication adherence in renal transplant recipients. MATERIAL AND METHODS Adult RTRs were included in the study using convenient sampling. The participants were asked to complete the 8-item Morisky Medication Adherence Scale (MMAS-8) and Treatment Satisfaction Scale TSQM 1.4 in addition to several socio-demographic and treatment-related data. The results were statistically analyzed using univariate and multivariate logistic regression modelling in a stepwise procedure. RESULTS A total of 151 RTRs were included in the study, of which 52 were classified as adherent (34%). Univariate analysis showed that, in comparison with non-adherent RTRs, the adherent group demonstrated significantly higher satisfaction scores in the domains of convenience (96.6±8.7 vs. 85.3±19.3), side effects (95.9±14.1 vs. 82.6±24.1), and global satisfaction (93.4±9.8 vs. 86.7±16.7), while they had marginally higher satisfaction scores in the effectiveness domain (90.4±11.6 vs. 86.5±14.5). Results from multiple logistic regression showed that higher likelihood of adherence was significantly associated with increased satisfaction score in the convenience domain [AOR=1.76, 95% CI=(1.21, 2.55); p=0.003] and marginally related to increased satisfaction scores in the side effects domain [AOR=1.31, 95% CI=(0.99, 1.74); p=0.061]. Male RTRs were significantly more likely to be adherent than female RTRs [AOR=2.23, 95% CI=(1.02, 4.84); p=0.043]. CONCLUSIONS Although the adherence rate among RTRs is relatively

  19. 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

  20. [Granulocyte adherence and chemotaxis in children (author's transl)].

    PubMed

    Rister, M; Horatz, M

    1981-01-01

    Granulocyte adherence to endothelial surfaces associated with their chemotactic property enables these cells to leave the peripheral blood and to migrate into the tissue. This study was performed to investigate the effect of bacterial and viral infections as well as various kinds of therapies on these leukocyte functions. The adherence of control granulocytes to nylon fibers was 70%. In contrast to viral infections bacterial infections increased the adherence to 91%. Following the treatment with high dose methotrexate or vincristine the adherence was reduced to 20%. This granulocyte function defect was evident up to 14 days after the high dose methotrexate infusion. An age dependency of granulocyte adherence was not observed. In addition, viral infections as well as cytostatic therapy did not effect granulozyte chemotaxis. But bacterial infections and various defined phagocytic defects impaired the granulocyte chemotactic activity. PMID:7193772

  1. Human monocyte adherence measured by the nylon fibre microcolumn technique.

    PubMed

    Kelly, M K; Thong, Y H

    1984-11-30

    A simple rapid method for the measurement of human monocyte adherence using nylon fibre microcolumns is described. The kinetics indicate the optimal contact time to be 30 min for monocytes, compared with 10 min for neutrophils. The optimal temperature is 37 degrees C; significantly low values were obtained for 4 degrees C and 45 degrees C, while intermediate values were obtained for 25 degrees C. Monocyte adherence was more sensitive to inhibition by fluoride than cyanide, suggesting that energy for adherence is mainly derived from the glycolytic pathway. The addition of phorbol myristate acetate enhances monocyte adherence. Significant decay in monocyte adherence occurred after isolation from whole blood for 24 h or longer. PMID:6501891

  2. 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

  3. 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

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

    PubMed Central

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

    2015-01-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed

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

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  7. Adherence to insulin treatment in diabetes: can it be improved?

    PubMed

    Doggrell, Sheila Anne; Chan, Vincent

    2015-05-01

    Insulin is used in all subjects with Type 1 diabetes, and when Type 2 diabetes is not controlled by oral anti-diabetic medicines, insulin is also used in Type 2 diabetes. However, despite this use, there is still increased mortality and morbidity in subjects with diabetes, compared to subjects without diabetes. One of the factors, which may be involved in this increased mortality and morbidity in subjects with diabetes, is nonadherence to insulin. Nonadherence rates to insulin are in the range of 20-38%, and many factors contribute to the nonadherence. The major aim of the review was to determine whether interventions to improve adherence to insulin do actually improve adherence to insulin. Most studies have shown that adherence to insulin was improved by changing from the vial-and-syringe approach to prefilled insulin pens, but not all studies have shown that this translated into better glycemic control and clinical outcomes. The results of studies using automatic telephone messages to improve adherence to insulin to date are inconclusive. There is limited and variable evidence that an intervention by a nurse/educator, which discusses adherence to medicines, does improve adherence to insulin. In contrast, there is little or no evidence that an extra intervention by a doctor or an intervention by a pharmacist, which discusses adherence to insulin, does actually improve the measured adherence to insulin. In conclusion, rather than assuming that an intervention by a health professional discussing adherence to insulin actually improves adherence to insulin, long-term studies investigating this are required. PMID:25195971

  8. Smartphone medication adherence apps: Potential benefits to patients and providers

    PubMed Central

    Dayer, Lindsey; Heldenbrand, Seth; Anderson, Paul; Gubbins, Paul O.; Martin, Bradley C.

    2014-01-01

    Objectives To provide an overview of medication adherence, discuss the potential for smartphone medication adherence applications (adherence apps) to improve medication nonadherence, evaluate features of adherence apps across operating systems (OSs), and identify future opportunities and barriers facing adherence apps. Practice description Medication nonadherence is a common, complex, and costly problem that contributes to poor treatment outcomes and consumes health care resources. Nonadherence is difficult to measure precisely, and interventions to mitigate it have been largely unsuccessful. Practice innovation Using smartphone adherence apps represents a novel approach to improving adherence. This readily available technology offers many features that can be designed to help patients and health care providers improve medication-taking behavior. Main outcome measures Currently available apps were identified from the three main smartphone OSs (Apple, Android, and Blackberry). In addition, desirable features for adherence apps were identified and ranked by perceived importance to user desirability using a three-point rating system: 1, modest; 2, moderate; or 3, high. The 10 highest-rated apps were installed and subjected to user testing to assess app attributes using a standard medication regimen. Results 160 adherence apps were identified and ranked. These apps were most prevalent for the Android OS. Adherence apps with advanced functionality were more prevalent on the Apple iPhone OS. Among all apps, MyMedSchedule, MyMeds, and RxmindMe rated the highest because of their basic medication reminder features coupled with their enhanced levels of functionality. Conclusion Despite being untested, medication apps represent a possible strategy that pharmacists can recommend to nonadherent patients and incorporate into their practice. PMID:23571625

  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. 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

  11. [What can we learn in future from the data of the German Arthroplasty Registry (EPRD) in comparison to other registries?].

    PubMed

    Jansson, V; Steinbrück, A; Hassenpflug, J

    2016-06-01

    The German Arthroplasty Registry (EPRD) was founded in 2010 and has been in full operation since 2014. Previous attempts at a systematic data collection of elective and non-elective knee and hip replacement in Germany failed mainly because of the long-term lack of funding. The EPRD is an interdisciplinary collaborative partnership between the German Association of Orthopedics and Orthopedic Surgery (DGOOC), all implant manufacturers of the German Medical Technology Association (BVMed), health insurers (AOK and the Association of Additional Healthcare Insurance) and hospitals (German Hospital Federation). As part of this cooperation a worldwide unique implant database has been set up, which includes all relevant components and a detailed description of implant specifications. This implant library enables a detailed evaluation of implant survival, revision rates and possible inferior implant performance of knee and hip replacements in Germany. At the end of 2015 the EPRD encompassed over 200,000 registered operations. Due to the high number of hip and knee arthroplasties in Germany with many different implants from different manufacturers there will be a rapid growth of data that are available for a national and also international comparison of the results. PMID:27160728

  12. Zidovudine Adherence in Persons with AIDS

    PubMed Central

    Smith, Meredith Y; Rapkin, Bruce D; Morrison, Anne; Kammerman, Sandra

    1997-01-01

    OBJECTIVE To examine the relation of patient beliefs about medication usage and adherence to zidovudine (ZDV) therapy in persons with AIDS. DESIGN Face-to-face interviews were used to determine attitudes of persons with AIDS toward ZDV and other prescribed medications, history of ZDV usage, and sociodemographics. SETTING A public hospital infectious disease clinic, an AIDS day care program, and an inpatient unit in a voluntary hospital where care was provided cooperatively by staff and an informal–care partner. PATIENTS/PARTICIPANTS One hundred forty-one people with the acquired immunodeficiency syndrome agreed to be reinterviewed as part of a longitudinal, New York City–based study examining outcomes related to quality of life. Initial recruitment procedures were to approach all active AIDS patients at each of the three sites between January and July of 1992; reinterviews, which were conducted an average of 6 months later, occurred from mid-1992 through May of 1993. MEASUREMENTS AND MAIN RESULTS The Zidovudine Drug Attitude Inventory was used to assess subjective feelings and attitudes concerning ZDV and prescribed medications in general. Respondents were grouped into five categories on the basis of their ZDV usage history: (1) “short-term” users (i.e., those who had been taking ZDV for 25 months or less); (2) “long-term” users (i.e., those who had been taking ZDV for more than 25 months); (3) self-terminated users; (4) doctor-terminated users; and (5) never users. Long-term users were likely to view ZDV as an illness prophylactic. In contrast, self-terminated users and never users were most likely to believe that ZDV caused adverse side effects and that medicine need not be taken as prescribed. CONCLUSIONS Patients’ beliefs about ZDV were significantly associated with adherence-related behavior. In particular, those who had self-terminated ZDV treatment believed that taking the drug was harmful, were skeptical of its ability to prevent illness, and

  13. [Post-authorization research, registries, and drug development].

    PubMed

    Patarnello, Francesca; Recchia, Giuseppe

    2013-06-01

    In the last decade regulators, payers and health care providers tried to react to three major problems in drug development and drug use in clinical practice: the pharmaceutical R&D productivity crisis, the immaturity of benefit-risk profile for several newly approved drugs and the overall impact on economic sustainability of reimbursing new high cost drugs in their systems. The potentiality of create a continuum between the evidence requirements relevant for registration, for reimbursement and for post authorization research is clear. All different parties involved, like regulators, HTA agencies, scientific communities and manufacturers, are working to improve the knowledge profile of new drugs in order to anticipate the patient access to innovation, limiting or preventing the clinical and economical risks deriving from an incomplete safety and effectiveness profile. The Italian example of "New Drugs AIFA Registries", with or without the application of risk sharing schemes (cost sharing, pay for performance, etc.), introduced a new process and increased the sensitivity on this topic. However this might probably represents only a partial answer to the problem of how to set up the governance of coverage with evidence, drug utilization monitoring, comparative effectiveness research, outcome research programs and may be how to link them to access, pricing and reimbursement. The step change in post authorization research could be to "integrate" different sources and stakeholders in a wider and continuous approach, in a well designed and inclusive "second generation" HTA approach, where all resources (competencies, data, funding) will concur to increase the evidence profile and reduce the risks, and where any "evidence generation approach" is really compliant with the standard and rules of best research practices. PMID:23801233

  14. Arrive: A retrospective registry of Indian patients with venous thromboembolism

    PubMed Central

    Kamerkar, Dhanesh R.; John, M. Joseph; Desai, Sanjay C.; Dsilva, Liesel C.; Joglekar, Sadhna J.

    2016-01-01

    Background and Aim: There is lack of substantial Indian data on venous thromboembolism (VTE). The aim of this study was to provide real-world information on patient characteristics, management strategies, clinical outcomes, and temporal trends in VTE. Subjects and Methods: Multicentre retrospective registry involving 549 medical records of patients with confirmed diagnosis of VTE (deep vein thrombosis [DVT] confirmed by Doppler ultrasonography; pulmonary embolism [PE] by computed tomography, pulmonary angiography and/or V/Q scan) from 2006 to 2010 at three Indian tertiary care hospitals. Results: Acute DVT without PE, acute DVT with PE, and PE alone were reported in 64% (352/549), 23% (124/549), and 13% (73/549) patients, respectively. Mean age was 47 (±16) years, and 70% were males. H/o DVT (34%), surgery including orthopedic surgery (28%), trauma (16%), and immobilization >3 days (14%) were the most common risk factors for VTE. Hypertension (25%), diabetes (19%), and neurological disease (other than stroke) (8%) were the most common co-morbidities. Most (94%) were treated with heparin alone (82%) or fondaparinux (2%) for initial anticoagulation; low molecular weight heparin alone (5%) or warfarin/acenocoumarol (76%) for long-term anticoagulation. Anticoagulant treatment was stopped because of bleeding in 2% (9/515) patients. Mortality was 7% among patients diagnosed with VTE during hospital stay versus 1% in those hospitalized with diagnosed VTE. The annual incidence of DVT (±PE) increased from 2006 to 2010. Conclusion: Acute DVT alone was responsible for the substantial burden of VTE in Indian patients. Bleeding was not the limiting factor for anticoagulant treatment in most patients. PMID:27076726

  15. Pancreas Transplantation—Registry Report and a Commentary

    PubMed Central

    Sutherland, David E. R.; Kendall, David M.

    1985-01-01

    From December 1966 through December 1984, there were 561 pancreas transplants reported to the American College of Surgeons/National Institutes of Health Organ Transplant Registry, including 60 from 1966 through June 1977, 206 from July 1977 through December 1982 and 295 from January 1983 through December 1984. One-year graft function-survival rates (insulin-independent) in each of the three periods were 3%, 20% and 40%, and the corresponding patient survival rates were 40%, 72% and 77%. Currently 140 patients have functioning grafts, 76 for more than one year. Of the transplants since July 1977, one-year graft survival rates according to technique are 41% for enteric drainage (N = 155), 30% for polymer injection (N = 260) and 29% for urinary drainage (N = 47). Pancreas graft survival rates at one year according to whether or not the recipients have had a kidney transplant were 35% for recipients of simultaneous grafts (N = 281), 28% in recipients of a pancreas after a kidney (N = 112) and 26% in recipients of a pancreas only who did not have uremia (N = 106); corresponding patient survival rates were 69%, 83% and 83%. Overall, one-year pancreas graft survival rates according to whether the patients did or did not have end-stage diabetic nephropathy were 33% versus 25% and the corresponding patient survival rates were 73% versus 84% (P < .01). Patient survival rates were significantly higher in those without than in those with end-stage diabetic nephropathy. An analysis of technically successful grafts according to principal immunosuppressant showed one-year function rates of 46% in 258 cyclosporine-treated recipients and 26% in 143 azathioprine-treated recipients. Pancreas graft survival rates have progressively improved and the procedure has become safer with advances in surgical technique and immunosuppression. Pancreas transplantation is currently applicable to patients with diabetes mellitus whose complications are, or predictably will be, more serious than the

  16. Short message service (SMS) reminders and real-time adherence monitoring improve antiretroviral therapy adherence in rural Uganda

    PubMed Central

    Haberer, Jessica E.; Musiimenta, Angella; Atukunda, Esther C.; Musinguzi, Nicholas; Wyatt, Monique A.; Ware, Norma C.; Bangsberg, David R.

    2016-01-01

    Objective: To explore the effects of four types of short message service (SMS) plus real-time adherence monitoring on antiretroviral therapy (ART) adherence: daily reminders, weekly reminders, reminders triggered after a late or missed dose (delivered to patients), and notifications triggered by sustained adherence lapses (delivered to patient-nominated social supporters). Design: Pilot randomized controlled trial. Methods: Sixty-three individuals initiating ART received a real-time adherence monitor and were randomized (1 : 1 : 1): (1) Scheduled SMS reminders (daily for 1 month, weekly for 2 months), then SMS reminders triggered by a late or missed dose (no monitoring signal within 2 h of expected dosing); SMS notifications to social supporters for sustained adherence lapses (no monitoring signal for >48 h) added after 3 months. (2) Triggered SMS reminders starting at enrolment; SMS notifications to social supporters added after 3 months. (3) Control: No SMS. HIV RNA was determined at 9 months. Percentage adherence and adherence lapses were compared by linear generalized estimating equations and Poisson regression, respectively. Results: Median age was 31 years, 65% were women, and median enrolment CD4+ cell count was 322 cells/μl 97% took once daily tenofovir/emtricitabine/efavirenz. Compared to control, adherence was 11.1% higher (P = 0.04) and more than 48-h lapses were less frequent (IRR 0.6, P = 0.02) in the scheduled SMS arm. Adherence and more than 48-h lapses were similar in the triggered SMS arm and control. No differences in HIV RNA were seen. Conclusion: Scheduled SMS reminders improved ART in the context of real-time monitoring. Larger studies are needed to determine the impact of triggered reminders and role of social supporters in improving adherence. PMID:26760452

  17. The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends

    ERIC Educational Resources Information Center

    Schendel, Diana E.; Bresnahan, Michaeline; Carter, Kim W.; Francis, Richard W.; Gissler, Mika; Grønborg, Therese K.; Gross, Raz; Gunnes, Nina; Hornig, Mady; Hultman, Christina M.; Langridge, Amanda; Lauritsen, Marlene B.; Leonard, Helen; Parner, Erik T.; Reichenberg, Abraham; Sandin, Sven; Sourander, Andre; Stoltenberg, Camilla; Suominen, Auli; Surén, Pål; Susser, Ezra

    2013-01-01

    The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in…

  18. Thermal contact conductance of adhered microcantilevers

    NASA Astrophysics Data System (ADS)

    Huxtable, Scott T.; Cahill, David G.; Phinney, Leslie M.

    2004-02-01

    The thermal contact conductance G for polycrystalline silicon cantilever beams that are adhered to an underlying substrate is examined using two different optical techniques. Using time-domain thermoreflectance, we measure G=9±2 MW m-2 K-1 at 25 °C and G=4±1 MW m-2 K-1 at 150 °C. The room temperature value is confirmed using a modified Ångström method, which establishes a lower limit of G>5 MW m-2 K-1. This contact conductance is a factor of 10-105 greater than values reported for metal-metal and ceramic-ceramic interfaces. The large interfacial conductance is consistent with the presence of a thin layer of water trapped between the cantilever and the substrate. The thermal conductivity Λ of the phosphorus doped polysilicon cantilever is nearly isotropic with Λcrossplane=65 W m-1 K-1, and Λin plane=70 W m-1 K-1 at room temperature.

  19. Contractile network models for adherent cells.

    PubMed

    Guthardt Torres, P; Bischofs, I B; Schwarz, U S

    2012-01-01

    Cells sense the geometry and stiffness of their adhesive environment by active contractility. For strong adhesion to flat substrates, two-dimensional contractile network models can be used to understand how force is distributed throughout the cell. Here we compare the shape and force distribution for different variants of such network models. In contrast to Hookean networks, cable networks reflect the asymmetric response of biopolymers to tension versus compression. For passive networks, contractility is modeled by a reduced resting length of the mechanical links. In actively contracting networks, a constant force couple is introduced into each link in order to model contraction by molecular motors. If combined with fixed adhesion sites, all network models lead to invaginated cell shapes, but only actively contracting cable networks lead to the circular arc morphology typical for strongly adhering cells. In this case, shape and force distribution are determined by local rather than global determinants and thus are suited to endow the cell with a robust sense of its environment. We also discuss nonlinear and adaptive linker mechanics as well as the relation to tissue shape. PMID:22400597

  20. Contractile network models for adherent cells

    NASA Astrophysics Data System (ADS)

    Guthardt Torres, P.; Bischofs, I. B.; Schwarz, U. S.

    2012-01-01

    Cells sense the geometry and stiffness of their adhesive environment by active contractility. For strong adhesion to flat substrates, two-dimensional contractile network models can be used to understand how force is distributed throughout the cell. Here we compare the shape and force distribution for different variants of such network models. In contrast to Hookean networks, cable networks reflect the asymmetric response of biopolymers to tension versus compression. For passive networks, contractility is modeled by a reduced resting length of the mechanical links. In actively contracting networks, a constant force couple is introduced into each link in order to model contraction by molecular motors. If combined with fixed adhesion sites, all network models lead to invaginated cell shapes, but only actively contracting cable networks lead to the circular arc morphology typical for strongly adhering cells. In this case, shape and force distribution are determined by local rather than global determinants and thus are suited to endow the cell with a robust sense of its environment. We also discuss nonlinear and adaptive linker mechanics as well as the relation to tissue shape.

  1. Micromolded Arrays for Separation of Adherent Cells

    PubMed Central

    Wang, Yuli; Phillips, Colleen; Xu, Wei; Pai, Jeng-Hao; Dhopeshwarkar, Rahul; Sims, Christopher E.; Allbritton, Nancy

    2010-01-01

    We present an efficient, yet inexpensive, approach for isolating viable single cells or colonies from a mixed population. This cell microarray platform possesses innovations in both the array manufacture and the manner of target cell release. Arrays of microwells with bases composed of detachable concave elements, termed microrafts, were fabricated by a dip-coating process using a polydimethylsiloxane mold as the template and the array substrate. This manufacturing approach enabled the use of materials other than photoresists to create the array elements. Thus microrafts possessing low autofluorescence could be fabricated for fluorescence-based identification of cells. Cells plated on the microarray settled and attached at the center of the wells due to the microrafts’ concavity. Individual microrafts were readily dislodged by the action of a needle inserted through the compliant polymer substrate. The hard polymer material (polystyrene or epoxy resin) of which the microrafts were composed protected the cells from damage by the needle. For cell analysis and isolation, cells of interest were identified using a standard inverted microscope and microrafts carrying target cells were dislodged with the needle. The released cells/microrafts could be efficiently collected, cultured and clonally expanded. During the separation and collection procedures, the cells remained adherent and provided a measure of protection during manipulation, thus providing an extremely high single-cell cloning rate (>95%). Generation of a transfected cell line based on expression of a fluorescent protein demonstrated an important application for performing on-chip cell separations. PMID:20838672

  2. Electronic monitoring and counseling to improve medication adherence.

    PubMed

    Rosen, Marc I; Rigsby, Michael O; Salahi, Jamelah T; Ryan, Caitlin E; Cramer, Joyce A

    2004-04-01

    Electronic caps, pill caps that record the date and time of pill bottle opening provide an objective measure of adherence to prescribed medication. A promising intervention to improve adherence, cue-dose training, involves reviewing patients' pill cap-generated reports concerning their medication-taking and offering individualized recommendations for remembering to take medications at specific times of day. In this preliminary study, 79 patients prescribed the antihyperglycemic medication metformin had adherence assessed during a 4-week baseline period. Adherence, defined as proportion of prescribed doses taken within a predetermined 4-h window, was measured using electronic MEMS caps. Those who had less than 80% baseline adherence (n = 33) were randomly assigned to either receive 4 months of cue-dose training (n = 16) or to a control group (n = 17). Cue-dose training was associated with significantly better adherence to metformin (mean improvement of 15%). The effects of cue-dose training on adherence to other antihyperglycemic medication did not reach statistical significance. Glycosylated hemoglobin (a measure of blood sugar control) did not differ between groups. Data from nine patients who reviewed pill cap-generated data with their primary care providers suggested that both patients and providers found the discussion moderately helpful and not at all uncomfortable. PMID:14998735

  3. Challenges of treatment adherence in older patients with Parkinson's disease.

    PubMed

    Bainbridge, Jacquelyn L; Ruscin, J Mark

    2009-01-01

    Patient adherence to a medication regimen is critical to treatment outcome, quality of life and future healthcare costs. For elderly patients with Parkinson's disease, obstacles to adherence can be particularly complex. Beyond age-related and economic factors, elderly patients with Parkinson's disease often require complicated dosing or titration schedules and have multiple co-morbidities that necessitate administration of therapies from multiple drug classes. In addition, neuropsychiatric disturbances and cognitive impairment, which are often part of the disease process, can affect adherence, as can variable responses to anti-parkinsonian agents as the disease progresses. Several recent studies in patients with Parkinson's disease point to the need for establishing good adherence patterns early and maintaining these throughout the course of treatment. To achieve optimal adherence in elderly patients with Parkinson's disease, a combination of pharmacological and non-pharmacological approaches appears to be the best strategy for success. Examples include a strong provider-patient relationship, educational intervention by phone or face-to-face contact, simplified dosing and administration schedules, management and understanding of medication adverse events, and the use of adherence aids such as pill boxes and hour-by-hour organizational charts. Research into new avenues that include improved drug monitoring, pharmacogenetics and neuroprotective regimens may give rise to better adherence in elderly patients with Parkinson's disease in the future. PMID:19220071

  4. [Concept analysis of medication adherence in patients with chronic disease].

    PubMed

    Huang, Jen-Ying; Chen, Hsing-Mei

    2014-06-01

    Pharmacotherapy plays an important role in the management of chronic diseases. However, many patients with chronic disease do not adhere to their medication regimen. This results in worsening symptoms and frequent re-hospitalizations. As a result, healthcare providers may view these patients as bad. Medication adherence is a complex concept. Analyzing this concept may assist nurses to improve patient-centered care. This paper uses Walker & Avant's method to conduct a concept analysis of medication adherence. Results show the defining attributes of medication adherence as: (1) knowing and agreeing to the medication; (2) communicating and negotiating the regimen; and (3) active, continuous involvement in and appraisal of the treatment effect. Identified antecedents of medication adherence included the patient having: (1) a prescribed medication regimen; (2) cognitive and action abilities in her / his role as a patient; and (3) level of preparation for medication treatment. Identified consequences of medication adherence include: (1) improving symptom control; (2) decreasing re-hospitalizations and mortality; (3) reducing medical care costs; (4) restoring self-esteem; and (5) diminishing depression. It is hoped that this concept analysis provides a reference for nurses to achieve a better understanding of medication adherence and further improve nursing practice. PMID:24899565

  5. Adherence of Bordetella bronchiseptica to hamster lung fibroblasts.

    PubMed Central

    Plotkin, B J; Bemis, D A

    1984-01-01

    The adherence of Bordetella bronchiseptica smooth-, intermediate-, and rough-phase isolates to hamster lung fibroblasts (HLF) (Don line) was characterized by competitive inhibition studies and enzyme and chemical treatments of both the bacteria and the HLF. The adherence of the rough- and intermediate-phase isolates (n = 13) was altered by coincubation of the bacteria and HLF with cationic chelators, including EGTA and citrate. EGTA inhibition of the adherence of the rough- and intermediate-phase isolates could be overcome by the addition of Ca2+, Mn2+, Cd2+, or Sr2+ to the reaction mixture. In addition, citrate released bound bacteria from the HLF. Although the adherence of the smooth-phase isolates (n = 4) was unaltered by cationic chelators, binding was inhibited by N-acetylated amino sugars, with N-acetylglucosamine inhibiting 98% of the adherence of the smooth-phase isolates. Homogenization, protease K, and heat treatment (60 min, 60 degrees C) of the bacteria also resulted in a loss of adherence. It was concluded that B. bronchiseptica can adhere to HLF by at least two mechanisms and that the ligand responsible appears to be a proteinacious, heat labile cell surface component. PMID:6437989

  6. Antiretroviral adherence and treatment outcomes among adult Ethiopian patients.

    PubMed

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

    2016-08-01

    Developing appropriate strategies to sustain optimal medication adherence among the increasing number of HIV-positive patients taking antiretroviral therapy (ART) in sub-Saharan Africa is a major challenge. The objective of this study was to determine patient, regimen, disease, patient-provider, and healthcare-related factors associated with adherence with ART over a one-year period, and assess the impact of adherence on treatment outcomes. We performed a prospective, observational study among 246 patients who were initiated on ART in Ethiopia. Of 172 who completed follow-up, 130 (75.6%) had ≥95% adherence. In the multivariate analyses, a higher baseline BMI (OR, 1.2; 95% CI 1.0, 1.4) and use of reminder devices (OR, 9.1; 95% CI 2.0, 41.6) remained positively associated with adherence, while a higher HIV symptom and adverse drug reaction distress score was an independent negative predictor of adherence (OR, 0.90; 95% CI 0.9, 1.0) CD4 count increase was significantly higher in the adherent patients compared to non-adherent patients at 12 months (159 cells/µL [interquartile range (IQR), 72-324 cells/µL] vs. 132 cells/µL [IQR, 43-190 cells/µL]; p = 0.026). Our findings indicate that interventions aimed at improving adherence and thereby treatment outcomes in patients initiated on ART should promote the use of reminder devices, and monitor HIV symptoms and adverse reaction distress and nutritional status. PMID:26829232

  7. Investigating Reasons for CPAP Adherence in Adolescents: A Qualitative Approach

    PubMed Central

    Prashad, Priya S.; Marcus, Carole L.; Maggs, Jill; Stettler, Nicolas; Cornaglia, Mary A.; Costa, Priscilla; Puzino, Kristina; Xanthopoulos, Melissa; Bradford, Ruth; Barg, Frances K.

    2013-01-01

    Study Objectives: Adolescents with obstructive sleep apnea syndrome (OSAS) represent an important but understudied subgroup of long-term continuous positive airway pressure (CPAP) users. The purpose of this qualitative study was to identify factors related to adherence from the perspective of adolescents and their caregivers. Methods: Individual open-ended, semi-structured interviews were conducted with adolescents (n = 21) and caregivers (n = 20). Objective adherence data from the adolescents' CPAP machines during the previous month was obtained. Adolescents with different adherence levels and their caregivers were asked their views on CPAP. Using a modified grounded theory approach, we identified themes and developed theories that explained the adolescents' adherence patterns. Results: Adolescent participants (n = 21) were aged 12-18 years, predominantly male (n = 15), African American (n = 16), users of CPAP for at least one month. Caregivers were mainly mothers (n = 17). Seven adolescents had high use (mean use 381 ± 80 min per night), 7 had low use (mean use 30 ± 24 min per night), and 7 had no use during the month prior to being interviewed. Degree of structure in the home, social reactions, mode of communication among family members, and perception of benefits were issues that played a role in CPAP adherence. Conclusions: Understanding the adolescent and family experience of using CPAP may be key to increasing adolescent CPAP adherence. As a result of our findings, we speculate that health education, peer support groups, and developmentally appropriate individualized support strategies may be important in promoting adherence. Future studies should examine these theories of CPAP adherence. Citation: Prashad PS; Marcus CL; Maggs J; Stettler N; Cornaglia MA; Costa P; Puzino K; Xanthopoulos M; Bradford R; Barg FK. Investigating reasons for CPAP adherence in adolescents: a qualitative approach. J Clin Sleep Med 2013;9(12):1303-1313. PMID:24340293

  8. Pharmacists’ perspectives on promoting medication adherence among patients with HIV

    PubMed Central

    Kibicho, Jennifer W.; Owczarzak, Jill

    2015-01-01

    Objectives To provide pharmacists’ perspectives on medication adherence barriers for patients with human immunodeficiency virus (HIV) and to describe pharmacists’ strategies for promoting adherence to antiretroviral medications. Design Multisite, qualitative, descriptive study. Setting Four midwestern U.S. states, from August through October 2009. Participants 19 pharmacists at 10 pharmacies providing services to patients with HIV. Intervention Pharmacists were interviewed using a semistructured interview guide. Main outcome measures Barriers to medication adherence, pharmacist interventions, challenges to promoting adherence. Results Pharmacists reported a range of adherence barriers that were patient specific (e.g., cognitive factors, lack of social support), therapy related (e.g., adverse effects, intolerable medications), and structural level (e.g., strained provider relationships). They used a combination of individually tailored, patient-specific interventions that identified and resolved adherence barriers and actively anticipated and addressed potential adherence barriers. Pharmacist interventions included medication-specific education to enhance patient self-efficacy, follow-up calls to monitor adherence, practical and social support to motivate adherence, and patient referrals to other health care providers. However, the pharmacists faced internal (e.g., lack of time, lack of trained personnel) and external (e.g., insurance policies that disallowed patient enrollment in automatic prescription refill program) challenges. Conclusion Pharmacists in community settings went beyond prescription drug counseling mandated by law to provide additional pharmacy services that were tailored to the needs of patients with HIV. Given that many individuals with HIV are living longer, more research is needed on the effectiveness and cost effectiveness of pharmacists’ interventions in clinical practice, in order to inform insurance reimbursement policies. PMID

  9. Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.

    PubMed

    Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns

    2016-07-01

    Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally. PMID:27159994

  10. Contemporary registries on P2Y12 inhibitors in patients with acute coronary syndromes in Europe: overview and methodological considerations.

    PubMed

    Jukema, J Wouter; Lettino, Maddalena; Widimský, Petr; Danchin, Nicolas; Bardaji, Alfredo; Barrabes, Jose A; Cequier, Angel; Claeys, Marc J; De Luca, Leonardo; Dörler, Jakob; Erlinge, David; Erne, Paul; Goldstein, Patrick; Koul, Sasha M; Lemesle, Gilles; Lüscher, Thomas F; Matter, Christian M; Montalescot, Gilles; Radovanovic, Dragana; Lopez-Sendón, Jose; Tousek, Petr; Weidinger, Franz; Weston, Clive F M; Zaman, Azfar; Zeymer, Uwe

    2015-10-01

    Patient registries that document real-world clinical experience play an important role in cardiology as they complement the data from randomized controlled trials, provide valuable information on drug use and clinical outcomes, and evaluate to what extent guidelines are followed in practice. The Platelet Inhibition Registry in ACS EvalUation Study (PIRAEUS) project is an initiative of registry holders who are managing national or international registries observing patients with acute coronary syndromes (ACS). The aim of PIRAEUS is to systematically compare and combine available information/insights from various European ACS registries with a focus on P2Y12 inhibitors. The present publication introduces the 17 participating registries in a narrative and tabular form, and describes which ACS groups and which dual antiplatelet therapies were investigated. It sets the basis for upcoming publications that will focus on effectiveness and safety of the antiplatelets used. PMID:27532447

  11. Adherence of Borrelia burgdorferi to granulocytes of different animal species.

    PubMed

    Grassmann, B; Kopp, P A; Schmitt, M; Blobel, H

    1997-04-01

    Adherence of 4 Borrelia (B.) burgdorferi strains (z7/22, z7/27, z7/41, PBi) to polymorphonuclear granulocytes from different domestic animals (horses, cattle, sheep, dogs) was investigated. All 4 strains adhered to the granulocytes. Binding assays indicated that the adherence occurred between structures on the surface of the borreliae ("binding-sites") and on the membranes of the granulocytes ("receptors"). The "receptors" consisted of 4 fractions (A, B, C, and D) with components differing in molecular weight (MW) and binding activity for proteins on the surface of B. burgdorferi. Fraction A (MW 80000) had the highest binding activity for B. burgdorferi. PMID:9144911

  12. Noninfectious uveitis: strategies to optimize treatment compliance and adherence

    PubMed Central

    Dolz-Marco, Rosa; Gallego-Pinazo, Roberto; Díaz-Llopis, Manuel; Cunningham, Emmett T; Arévalo, J Fernando

    2015-01-01

    Noninfectious uveitis includes a heterogenous group of sight-threatening ocular and systemic disorders. Significant progress has been made in the treatment of noninfectious uveitis in recent years, particularly with regard to the effective use of corticosteroids and non-corticosteroid immunosuppressive drugs, including biologic agents. All of these therapeutic approaches are limited, however, by any given patient’s ability to comply with and adhere to their prescribed treatment. In fact, compliance and adherence are among the most important patient-related determinants of treatment success. We discuss strategies to optimize compliance and adherence. PMID:26316689

  13. Interventions to improve adherence to lipid lowering medication

    PubMed Central

    Schedlbauer, Angela; Schroeder, Knut; Peters, Tim; Fahey, Tom

    2014-01-01

    Background Lipid lowering drugs are still widely underused, despite compelling evidence about their effectiveness in the treatment and prevention of cardiovascular disease. Poor patient adherence to medication regimen is a major factor in the lack of success in treating hyperlipidaemia. In this review we focus on interventions, which encourage patients at risk of heart disease or stroke to take lipid lowering medication regularly. Objectives To assess the effect of interventions aiming at improved adherence to lipid lowering drugs, focusing on measures of adherence and clinical outcomes. Search strategy We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycInfo and CINAHL. Date of most recent search was in February 2003. No language restrictions were applied. Selection criteria Randomised controlled trials of adherence-enhancing interventions to lipid lowering medication in adults for both primary and secondary prevention of cardiovascular disease in an ambulatory setting. Data collection and analysis Two reviewers extracted data independently and assessed studies according to criteria outlined by the Cochrane Reviewers’ Handbook. Main results The eight studies found contained data on 5943 patients. Interventions could be stratified into four categories: 1. simplification of drug regimen, 2. patient information/education, 3. intensified patient care such as reminding and 4. complex behavioural interventions such as group sessions. Change in adherence ranged from −3% to 25% (decrease in adherence by 3% to increase in adherence by 25%). Three studies reported significantly improved adherence through simplification of drug regimen (category 1), improved patient information/education (category 2) and reminding (category 3). The fact that the successful interventions were evenly spread across the categories, does not suggest any advantage of one particular type of intervention. The methodological and analytical quality was

  14. A Systematic Review of CPAP Adherence Across Age Groups: Clinical and Empiric Insights for Developing CPAP Adherence Interventions

    PubMed Central

    Sawyer, A.M.; Gooneratne, N.; Marcus, C.L.; Ofer, D.; Richards, K.C.; Weaver, T.E.

    2011-01-01

    Continuous positive airway pressure (CPAP) is a highly efficacious treatment for obstructive sleep apnea (OSA) but adherence to the treatment limits its overall effectiveness across all age groups of patients. Factors that influence adherence to CPAP include disease and patient characteristics, treatment titration procedures, technological device factors and side effects, and psychological and social factors. These influential factors have guided the development of interventions to promote CPAP adherence. Various intervention strategies have been described and include educational, technological, psychosocial, pharmacological, and multi-dimensional approaches. Though evidence to date has led to innovative strategies that address adherence in CPAP-treated children, adults, and older adults, significant opportunities exist to develop and test interventions that are clinically applicable, specific to subgroups of patients likely to demonstrate poor adherence, and address the multifactorial nature of CPAP adherence. The translation of CPAP adherence promotion interventions to clinical practice is imperative to improve health and functional outcomes in all persons with CPAP-treated OSA. PMID:21652236

  15. Optimizing Adherence Through Provider and Patient Messaging.

    PubMed

    Millman, Mark D; Den Hartog, Kevin S

    2016-08-01

    Health care organizations continue to look for cost-effective ways to modify patient behaviors toward a healthier lifestyle, including improving compliance with evidence-based treatment guidelines. This study evaluated the impact on compliance to evidence-based guidelines associated with a member messaging program (MMP) that is delivered via hard copy through the mail and also electronically via web portals. Anonymized member data were reviewed using disease-specific algorithms designed to find gaps in evidence-based care. Gap closure was monitored over a 6-month period after identification and was the main outcome under study. MMP members received at least 1 message describing a specific gap in care identified via claims data. In addition, if a match was possible, the same message also was sent to the member's physician. MMP members were then compared to a cohort not receiving messages but having the same gaps in care. Multiple regression analysis was performed using a generalized linear model with gap closure as the outcome to infer the relationship between receiving a notification and closing a gap in care. Of the 140 gaps addressed in the study, 23 showed a statistically significant (P < 0.05) difference in gap closure rates between the messaged group and the non-messaged group. Diabetes-related gap closures accounted for 10 of the 23 significant outcomes. Messages notifying of a gap in care can influence member health care adherence to evidence-based guidelines, particularly with diabetes-related gaps in care. (Population Health Management 2016;19:264-271). PMID:26451807

  16. Fewer Bacteria Adhere to Softer Hydrogels

    PubMed Central

    Kolewe, Kristopher W.; Peyton, Shelly R.; Schiffman, Jessica D.

    2015-01-01

    Clinically, biofilm-associated infections commonly form on intravascular catheters and other hydrogel surfaces. The overuse of antibiotics to treat these infections has led to the spread of antibiotic resistance and underscores the importance of developing alternative strategies that delay the onset of biofilm formation. Previously, it has been reported that during surface contact, bacteria can detect surfaces through subtle changes in the function of their motors. However, how the stiffness of a polymer hydrogel influences the initial attachment of bacteria is unknown. Systematically, we investigated poly(ethylene glycol) dimethacrylate (PEGDMA) and agar hydrogels that were twenty times thicker than the cumulative size of bacterial cell appendages, as a function of Young’s moduli. Soft (44.05 – 308.5 kPa), intermediate (1495 – 2877 kPa), and stiff (5152 – 6489 kPa) hydrogels were synthesized. Escherichia coli and Staphylococcus aureus attachment onto the hydrogels was analyzed using confocal microscopy after 2 and 24 hr incubation periods. Independent of hydrogel chemistry and incubation time, E. coli and S. aureus attachment correlated positively to increasing hydrogel stiffness. For example, after a 24 hr incubation period, there were 52% and 82% less E. coli adhered to soft PEGDMA hydrogels, than to the intermediate and stiff PEGDMA hydrogels, respectively. A 62% and 79% reduction in the area coverage by the Gram-positive microbe S. aureus occurred after 24 hr incubation on the soft versus intermediate and stiff PEGDMA hydrogels. We suggest that hydrogel stiffness is an easily tunable variable that, potentially, could be used synergistically with traditional antimicrobial strategies to reduce early bacterial adhesion, and therefore the occurrence of biofilm-associated infections. PMID:26291308

  17. Dietary guideline adherence for gastroesophageal reflux disease

    PubMed Central

    2014-01-01

    Background Gastroesophageal reflux disease (GERD) is the most common gastrointestinal disease, and the cost of health care and lost productivity due to GERD is extremely high. Recently described side effects of long-term acid suppression have increased the interest in nonpharmacologic methods for alleviating GERD symptoms. We aimed to examine whether GERD patients follow recommended dietary guidelines, and if adherence is associated with the severity and frequency of reflux symptoms. Methods We conducted a population-based cross-sectional study within the Kaiser Permanente Northern California population, comparing 317 GERD patients to 182 asymptomatic population controls. All analyses adjusted for smoking and education. Results GERD patients, even those with moderate to severe symptoms or frequent symptoms, were as likely to consume tomato products and large portion meals as GERD-free controls and were even more likely to consume soft drinks and tea [odds ratio (OR) = 2.01 95% confidence interval (CI) 1.12-3.61; OR = 2.63 95% CI 1.24-5.59, respectively] and eat fried foods and high fat diet. The only reflux-triggering foods GERD patients were less likely to consume were citrus and alcohol [OR = 0.59; 95% CI: 0.35-0.97 for citrus; OR = 0.41 95% CI 0.19-0.87 for 1 + drink/day of alcohol]. The associations were similar when we excluded users of proton pump inhibitors. Conclusions GERD patients consume many putative GERD causing foods as frequently or even more frequently than asymptomatic patients despite reporting symptoms. These findings suggest that, if dietary modification is effective in reducing GERD, substantial opportunities for nonpharmacologic interventions exist for many GERD patients. PMID:25125219

  18. Evaluation of participant recruitment methods to a rare disease online registry.

    PubMed

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. PMID:24700441

  19. Paediatric cancer stage in population-based cancer registries: the Toronto consensus principles and guidelines.

    PubMed

    Gupta, Sumit; Aitken, Joanne F; Bartels, Ute; Brierley, James; Dolendo, Mae; Friedrich, Paola; Fuentes-Alabi, Soad; Garrido, Claudia P; Gatta, Gemma; Gospodarowicz, Mary; Gross, Thomas; Howard, Scott C; Molyneux, Elizabeth; Moreno, Florencia; Pole, Jason D; Pritchard-Jones, Kathy; Ramirez, Oscar; Ries, Lynn A G; Rodriguez-Galindo, Carlos; Shin, Hee Young; Steliarova-Foucher, Eva; Sung, Lillian; Supriyadi, Eddy; Swaminathan, Rajaraman; Torode, Julie; Vora, Tushar; Kutluk, Tezer; Frazier, A Lindsay

    2016-04-01

    Population-based cancer registries generate estimates of incidence and survival that are essential for cancer surveillance, research, and control strategies. Although data on cancer stage allow meaningful assessments of changes in cancer incidence and outcomes, stage is not recorded by most population-based cancer registries. The main method of staging adult cancers is the TNM classification. The criteria for staging paediatric cancers, however, vary by diagnosis, have evolved over time, and sometimes vary by cooperative trial group. Consistency in the collection of staging data has therefore been challenging for population-based cancer registries. We assembled key experts and stakeholders (oncologists, cancer registrars, epidemiologists) and used a modified Delphi approach to establish principles for paediatric cancer stage collection. In this Review, we make recommendations on which staging systems should be adopted by population-based cancer registries for the major childhood cancers, including adaptations for low-income countries. Wide adoption of these guidelines in registries will ease international comparative incidence and outcome studies. PMID:27300676

  20. Leveraging effective clinical registries to advance medical care quality and transparency.

    PubMed

    Klaiman, Tamar; Pracilio, Valerie; Kimberly, Laura; Cecil, Kate; Legnini, Mark

    2014-04-01

    Policy makers, payers, and the general public are increasingly focused on health care quality improvement. Measuring quality requires robust data systems that collect data over time, can be integrated with other systems, and can be analyzed easily for trends. The goal of this project was to study effective tools and strategies in the design and use of clinical registries with the potential to facilitate quality improvement, value-based purchasing, and public reporting on the quality of care. The research team worked with an expert panel to define characteristics of effectiveness, and studied examples of effective registries in cancer, cardiovascular care, maternity, and joint replacement. The research team found that effective registries were successful in 1 or more of 6 key areas: data standardization, transparency, accuracy/completeness of data, participation by providers, financial sustainability, and/or providing feedback to providers. The findings from this work can assist registry designers, sponsors, and researchers in implementing strategies to increase the use of clinical registries to improve patient care and outcomes. PMID:24152057