WorldWideScience

Sample records for research volunteer registry

  1. Volunteering in later life: research frontiers.

    Science.gov (United States)

    Morrow-Howell, Nancy

    2010-07-01

    This review summarizes the current knowledge about volunteering in later life and suggests 5 research questions at the forefront of knowledge development. Rates of volunteering do not decline significantly until the middle of the 7th decade, and older volunteers commit more hours than younger volunteers. Older adults with more human and social capital tend to volunteer, and there is good evidence of a reciprocal relationship between volunteering and well-being. Program and policy developments in the field are outstripping production of knowledge to support evidence-based practices. Research on the dynamics of volunteering over the life course as well as the patterns of activities that co-occur with volunteering is needed to guide program development. Research methods and findings from transdisciplinary work on the mechanisms through which psychosocial conditions affect health must be extended to the study of the effects of volunteering on older adults. Finally, we need to engage in more applied social science aimed at improving volunteer management, especially recruitment and retention of older volunteers.

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

    Science.gov (United States)

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

    2014-06-01

    resuscitation registry is an instrument of quality management and a research network. The registry documents the course in patients who have undergone resuscitation at the time points of first aid, further management and long-term outcome and it can therefore provide a complete presentation of the procedures carried out and the quality of the outcomes. In addition, important scientific questions can be answered from the database. For example, a score for benchmarking the outcome quality after out-of-hospital resuscitation, known as the return of spontaneous circulation (ROSC) after cardiac arrest (RACA) score, has been developed. The registry is available for all emergency medical services (EMS) and hospitals in Germany and other German-speaking countries.

  3. The irradiation of volunteers in medical research

    International Nuclear Information System (INIS)

    Rae, S.

    1976-01-01

    Attempts to produce guidelines for use in medical research involving the irradiation of volunteers are surveyed. The recommendations of the British Institute of Radiology (Irradiation of Human Subjects for Medical Research, Bull. Brit. Radiology, 1975, vol.1, no.2, 4) are summarized. These recommendations, based on a preliminary working document produced by the World Health Organization, are considered in three parts, the selection of subjects, the categorisation and the approval of research projects. The importance of freely given and informed consent is emphasized. The suggested four categories of project are classified by the amount of total body radiation to be received by the subject in each project, and the necessary assessment and prior approval procedures are related to this classification. The imposition of a lifetime exposure limit is compared with occupational exposures which are assessed on an annual basis, and the ICRP's 'planned special exposures'. Repeated irradiation of the same subject, although permissible within the recommended limits, may create difficulties. The total lifetime accumulated dose may not always be immediately available if the subject has worked in a number of different establishments. The possibility of compiling an approved list of procedures to reduce some of the anticipated delays in processing applications is discussed. (author)

  4. Encouraging Volunteer Participation in Health Research: The Role ...

    African Journals Online (AJOL)

    Health research mainly relies on volunteers to generate data. Volunteer participants not only help provide necessary information to solve problems but also contribute to free participation which in turn helps the research wheel to continue. People mainly contribute to different nonprofit organizations by giving money for ...

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

    NARCIS (Netherlands)

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

    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

  6. Informed consent and registry-based research - the case of the Danish circumcision registry.

    Science.gov (United States)

    Ploug, Thomas; Holm, Søren

    2017-09-15

    Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent - Meta consent - aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised.

  7. The EpiCom Survey-Registries Across Europe, Epidemiological Research and Beyond

    DEFF Research Database (Denmark)

    Gordon, Hannah; Langholz, Ebbe

    2017-01-01

    The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD......] registries and biobanks, and cancer and surgical registries. The scale and nature of registries were investigated, and where possible a contact detail for each registry was obtained.The survey demonstrated 33 birth and death registers across Europe. It also highlighted ethical and legal challenges in linking...... information from health and social registries: 30 delegates reported that their home country has a hospital database; 21 have adverse events registers, although the majority only mandate reporting of events that occur during drug trials; 17 countries have twin registries; And IBD registries have been...

  8. The irradiation of human volunteer subjects in research

    International Nuclear Information System (INIS)

    Rosen, R.

    1980-01-01

    In medical research radiation is sometimes used to obtain data from healthy individuals. These subjects gain no specific benefit from the research. To safeguard their welfare, constraints are imposed on the dose to be received, on the selection of volunteer subjects, on ensuring their understanding of the procedures and risks, and on obtaining their free consent to participate. The research proposals are assessed by peer review prior to being approved by the host institution. The first example presented describes the use of diagnostic radiography to obtain in vivo data on the femur bone. Conservative dosimetry indicates an expected dose-equivalent per film of 0.5 mSv in bone and 0.18 mSv in bone marrow and gonad tissue. The critical organ total dose-equivalent is estimated to be 7% of the dose-equivalent limit for a volunteer. The second example involves the internal administration of radioactive tracers. Dosimetric calculations indicate an expected whole-body dose-equivalent of 0.5 mSv in the case of C-14 and 0.37 mSv in the case of H-3, these values bejng 10% and 7% of the relevant dose-equivalent limit. Both proposals were given conditional approval. In the generalized research use of volunteer human subjects the rights of the subject, the investigator and the institution need to be protected. At the University of New South Wales procedures have been introduced to govern all experjmental procedures involving human subjects. Some interesting problems which have arisen are discussed. (author)

  9. US Transuranium Registry

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.

    1981-01-01

    The US Transuranium Registry (USTR) is a nationwide autopsy research program conducted by Hanford Environmental Health Foundation since 1968. The USTR is designed to study the distribution, concentration, and possible tissue effects of transuranics in occupationally exposed workers who volunteer to participate in the study

  10. Use of media for recruiting clinical research volunteers in Ecuador.

    Science.gov (United States)

    Peñaherrera, Carlos Andrés; Palacios, Michael; Duarte, María Carolina; Santibáñez, Rocío; Tamariz, Leonardo; Palacio, Ana

    2015-12-10

    Up to this date, there are no reports made about the use of media for recruiting research volunteers in Latin American populations. Given the emergence of clinical research in Ecuador, a study of this kind in the local population will be beneficial for future research, and is probably applicable to other countries in the region. Two public calls were made for a cross-sectional study on cognitive function and diabetes. We only included people between 55 and 65 years of age without previous neurocognitive conditions. We invited individuals through interviews on the radio, television broadcasts and local newspapers, along with social media ads. Each individual was asked about the method by which they learned of the project. We calculated the frequency in which each method was reported and a chi-square test was used to assess gender differences in the results. A total of 274 patients were enrolled in the study, 64.2% are women and 35.8% men. We found that 29.93% learned of it from third persons, 20.8% through radio, 8.76% through social media, 8.39% by newspaper, and 5.11% by television, while a remaining 27.01% had not previously heard of the recruitment call. Methods reported varied significantly between men and women (p = 0.03). Traditional media were the most common method of recruitment, with radio interviews being the most frequently reported. Individually, none of them surpassed the frequency of people learning of the project from other people (snowball effect). Social networks play an important role, exceeding certain traditional media. We have described for the first time in Latin America the use of media as methods to recruit volunteers for research, and the importance of project dissemination by the participants to reach more people.

  11. Cost Savings from Volunteer Services: A Research Note.

    Science.gov (United States)

    Lucas, Wayne L.

    1988-01-01

    Assessed amount of cost-saving represented by the use of volunteer services within a probation and parole agency for a 12-month period. Results indicated that volunteer services represented cost savings in excess of $145,000 for the year, and that these services represent an average of 6.33 full time employees (FTEs) per month. (Author)

  12. Recruiting healthy volunteers for research participation via internet advertising.

    Science.gov (United States)

    Bramstedt, Katrina A

    2007-06-01

    The Internet is frequently used as a tool to recruit research subjects, and the US Food and Drug Administration (FDA) provides general guidance regarding such advertising. The goal of this study was to explore the incidence and nature of ethically inappropriate recruiting advertisements on the Internet and to provide descriptive guidance to researchers for responsible Internet recruiting. In this study, 119 advertisements recruiting health volunteers and listed on the CenterWatch Clinical Trials Listing Service website were reviewed for content as well as text style and visual effects. The majority of advertisements satisfied FDA guidance. However, 21 (18%) were ethically troubling with regard to font size, font style, and/or verbiage. In many advertisements, it was unclear if "medication" meant "investigational drug," "over-the-counter medication" or US FDA approved "prescription medication." Nearly 30% of the 119 advertisements used the terms "free," "no charge" or "no cost" as lures. Ethically problematic recruiting advertisements can be coercive and misleading. Descriptive guidance provided in this paper can help clinical researchers create ethically appropriate recruiting advertisements.

  13. The Cerebral Palsy Research Registry: Development and Progress Toward National Collaboration in the United States

    Science.gov (United States)

    Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.

    2011-01-01

    Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201

  14. A need for national registries and international collaborative research in multiple sclerosis.

    Science.gov (United States)

    Myhr, K M; Grytten, N; Torkildsen, Ø; Wergeland, S; Bø, L; Pugliatti, M; Aarseth, J H

    2012-01-01

    There is a growing need to identify biomarkers for early diagnosis and treatment in multiple sclerosis (MS). Such markers may also be involved in the cause and pathogenesis of the disease. Established national MS registries have through several decades allowed data collection to facilitate MS research. The European MS Registry (EUReMS) is a recent international collaborative effort to ultimately promote MS research and quality in health care across European countries. International collaborations based on such initiatives can facilitate studies on new biomarkers in MS. Important studies on data from MS registries, as well as national- and international collaboration networks have been conducted. The symposium "National MS Registries--to improve health care and research in Multiple Sclerosis" held in Bergen, Norway, earlier this year aimed to highlight the need and benefit from national MS registries and promote international collaborative research in MS. © 2012 John Wiley & Sons A/S.

  15. Social commitment of volunteering in clown-therapy: an empowering empirical research

    Directory of Open Access Journals (Sweden)

    Maria Rosaria Strollo

    2015-12-01

    Full Text Available This paper describes a quantitative empirical research on the factors influencing volunteers in clown-therapy. The field of the volunteering has social relevance particularly for its positive aspects on social community and on prosocial behavior. However, after a broad literature review on the topic of volunteering, the researcher aims to investigate the specific issue of volunteering in clown-therapy, exploring similarities and differences with voluntary activities in other settings, and analysing motivations and reasons for the choice to become a volunteer. A comparative and statistical approach is the real innovative aspect of this research in that it carried out factor analysis, comparative analysis and overcame the limits of the prior research on volunteering, which had dealt just with some dimensions of the complex phenomenon of volunteering.Finally, the research results confirm the hypothesis that volunteering in general, and volunteering in clown-therapy in particular, is an activity empowering both for the individual and for the entire community.

  16. Privacy and Trust Attitudes in the Intent to Volunteer for Data-Tracking Research

    Science.gov (United States)

    Smith, Catherine L.

    2016-01-01

    Introduction: The analysis of detailed interaction records is fundamental to development of user-centred systems. Researchers seeking such data must recruit volunteers willing to allow tracking of their interactions. This study examines privacy and trust attitudes in the intent to volunteer for research requiring installation of tracking software.…

  17. Describing the first 2000 registrations to the Research Registry®: A study protocol

    Directory of Open Access Journals (Sweden)

    Alexander J. Fowler

    Full Text Available Background: In 2013, the Declaration of Helsinki was updated and required the registration of all research studies involving human participants. Prior registries focussed on the registration of clinical trials and systematic reviews, and we estimate that only 10% of observational research is registered in a publically accessible registry. The Research Registry® was established to provide a venue of registration for any study, prospectively or retrospectively, involving human participants. This protocol describes the analysis for the first 2000 registrations received to the Research Registry®. Methods and analysis: Data for each registration to the Research Registry® (www.researchregistry.com, adapted from the World Health Organisation minimum data set, has been collected since the launch of the registry in 2015. A weekly curation process ensures that inappropriate registrations, such as duplicate studies or those not involving human participants, are removed from the registry. We will present the characteristics of the first 2000 registrations and how they have changed overtime. A quality score will be calculated for each registration by two independent teams, and inter-rater reliability will be calculated. Funding sources of work registered will also be presented. This process will also be performed for the systematic review portion of the registry (‘The Review Registry’, which will be considered separately. Ethics and dissemination: Ethical approval is not required for this study as it involves no human participants. The findings will be presented at international conferences and published in a peer reviewed journal.

  18. Privacy Impact Assessment for the Medical and Research Study Records of Human Volunteers

    Science.gov (United States)

    The Medical & Research Study Records of Human Volunteers System collects demographic and medical information on subjects who participate in research. Learn how this data is collected, used, access to the data, and the purpose of data collection.

  19. "Asia Literacy" through Research-Oriented School-Engaged Teacher Education: From Volunteer Mandarin Teaching-Assistants to Volunteer Teacher-Researchers

    Science.gov (United States)

    Singh, Michael; Zhao, Da Cheng

    2009-01-01

    This paper explores the possibilities for building research-oriented, school-engaged teacher education through the professional learning of volunteer teacher-researchers. Volunteerism in education covers a broad spectrum of people and activities ranging from working in school canteens to supporting language and literacy programs. This paper…

  20. Brazilian Clinical Trials Registry and the challenges for clinical research governance.

    Science.gov (United States)

    Laguardia, Josué; Piolli, Alessandro Luís; Prevot, Margareth; Ramalho, Luciano; Gamarski, Ricardo; Nishizawa, Claudio

    2011-01-01

    Over the past five years, efforts to set up a Brazilian clinical trials registry have progressed from early discussions in academic forums through to the establishment of the registry as a web-based computer platform. This article describes the process of developing and introducing the Brazilian Clinical Trials Registry (ReBEC), and its relationship with the authorities that regulate clinical research in Brazil. The Brazilian Clinical Trials Registry and the multilingual, free and open source, internet-based software developed to manage it are outcomes of partnerships among Brazilian federal and international health agencies. Information for describing the technical and operational dimensions of Rebec was drawn from technical documents and the records of the OpenTrials software development team and the ReBEC executive and advisory committees, which are available in free-access repositories. The Brazilian Clinical Trials Registry was launched in December 2010, and approved as a primary registry of the WHO ICTRP network in April 2011. ReBEC's arrival on-line and its acceptance as an ICTRP primary registry is a significant step in consolidating a policy of free access to information on clinical research in Brazil. © 2011 Blackwell Publishing Asia Pty Ltd and Chinese Cochrane Center, West China Hospital of Sichuan University.

  1. Informed consent and registry-based research - the case of the Danish circumcision registry

    DEFF Research Database (Denmark)

    Ploug, Thomas; Holm, Søren

    2017-01-01

    the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences......Background: Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether......) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research...

  2. Informed consent and registry-based research - the case of the Danish circumcision registry

    DEFF Research Database (Denmark)

    Ploug, Thomas; Holm, Søren

    2017-01-01

    Background: Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether...... the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences......) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research...

  3. Volunteer-Based System for Research on the Internet Traffic

    DEFF Research Database (Denmark)

    Bujlow, Tomasz; Balachandran, Kartheepan; Hald, Sara Ligaard

    2012-01-01

    To overcome the drawbacks of existing methods for traffic classification (by ports, Deep Packet Inspection, statistical classification) a new system was developed, in which the data are collected and classified directly by clients installed on machines belonging to volunteers. Our approach combines...... the information obtained from the system sockets, the HTTP content types, and the data transmitted through network interfaces. It allows to group packets into flows and associate them with particular applications or types of service. This paper presents the design of our system, the implementation, the testing...

  4. The benefits associated with volunteering among seniors: a critical review and recommendations for future research.

    Science.gov (United States)

    Anderson, Nicole D; Damianakis, Thecla; Kröger, Edeltraut; Wagner, Laura M; Dawson, Deirdre R; Binns, Malcolm A; Bernstein, Syrelle; Caspi, Eilon; Cook, Suzanne L

    2014-11-01

    There is an urgent need to identify lifestyle activities that reduce functional decline and dementia associated with population aging. The goals of this article are to review critically the evidence on the benefits associated with formal volunteering among older adults, propose a theoretical model of how volunteering may reduce functional limitations and dementia risk, and offer recommendations for future research. Database searches identified 113 papers on volunteering benefits in older adults, of which 73 were included. Data from descriptive, cross-sectional, and prospective cohort studies, along with 1 randomized controlled trial, most consistently reveal that volunteering is associated with reduced symptoms of depression, better self-reported health, fewer functional limitations, and lower mortality. The extant evidence provides the basis for a model proposing that volunteering increases social, physical, and cognitive activity (to varying degrees depending on characteristics of the volunteer placement) which, through biological and psychological mechanisms, leads to improved functioning; we further propose that these volunteering-related functional improvements should be associated with reduced dementia risk. Recommendations for future research are that studies (a) include more objective measures of psychosocial, physical, and cognitive functioning; (b) integrate qualitative and quantitative methods in prospective study designs; (c) explore further individual differences in the benefits associated with volunteering; (d) include occupational analyses of volunteers' specific jobs in order to identify their social, physical, and cognitive complexity; (e) investigate the independent versus interactive health benefits associated with volunteering relative to engagement in other forms of activity; and (f) examine the relationship between volunteering and dementia risk. (PsycINFO Database Record (c) 2014 APA, all rights reserved).

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

    Science.gov (United States)

    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.

  6. The psychological profile of parents who volunteer their children for clinical research: a controlled study.

    Science.gov (United States)

    Harth, S C; Johnstone, R R; Thong, Y H

    1992-06-01

    Three standard psychometric tests were administered to parents who volunteered their children for a randomised, double-blind placebo-controlled trial of a new asthma drug and to a control group of parents whose children were eligible for the trial but had declined the invitation. The trial took place at a children's hospital in Australia. The subjects comprised 68 parents who had volunteered their children and 42 who had not, a participation rate of 94 per cent and 70 per cent, respectively. The responses of these parents to the Gordon Survey of Interpersonal Values Questionnaire, the Coopersmith Self-Esteem Inventory and the Cattell Sixteen Personality Factor Questionnaire were analysed by computer. There was a marked difference between the psychological profiles of the two groups of parents. Volunteering parents put more value on benevolence while non-volunteering parents were more concerned with power and prestige. The self-esteem of volunteering parents was much lower than that of non-volunteering parents. Finally, volunteering parents were more introverted, exhibited greater anxiety and low supergo, while non-volunteering parents appeared to have greater social confidence and emotional stability. Since an individual's values, self-esteem and personality may be important antecedents of behaviour, these findings suggest that parents who volunteer their children for clinical research are not only socially disadvantaged and emotionally vulnerable, but may also be psychologically predisposed to volunteering. Furthermore, these findings provide evidence for the existence of a psychosocial 'filter' effect of the informed consent procedure, which may be discouraging the better educated, more privileged and psychologically resilient members of society from participation as research subjects.

  7. The psychological profile of parents who volunteer their children for clinical research: a controlled study.

    Science.gov (United States)

    Harth, S C; Johnstone, R R; Thong, Y H

    1992-01-01

    Three standard psychometric tests were administered to parents who volunteered their children for a randomised, double-blind placebo-controlled trial of a new asthma drug and to a control group of parents whose children were eligible for the trial but had declined the invitation. The trial took place at a children's hospital in Australia. The subjects comprised 68 parents who had volunteered their children and 42 who had not, a participation rate of 94 per cent and 70 per cent, respectively. The responses of these parents to the Gordon Survey of Interpersonal Values Questionnaire, the Coopersmith Self-Esteem Inventory and the Cattell Sixteen Personality Factor Questionnaire were analysed by computer. There was a marked difference between the psychological profiles of the two groups of parents. Volunteering parents put more value on benevolence while non-volunteering parents were more concerned with power and prestige. The self-esteem of volunteering parents was much lower than that of non-volunteering parents. Finally, volunteering parents were more introverted, exhibited greater anxiety and low supergo, while non-volunteering parents appeared to have greater social confidence and emotional stability. Since an individual's values, self-esteem and personality may be important antecedents of behaviour, these findings suggest that parents who volunteer their children for clinical research are not only socially disadvantaged and emotionally vulnerable, but may also be psychologically predisposed to volunteering. Furthermore, these findings provide evidence for the existence of a psychosocial 'filter' effect of the informed consent procedure, which may be discouraging the better educated, more privileged and psychologically resilient members of society from participation as research subjects. PMID:1619628

  8. Engaging community volunteers in participatory action research in Tāmaki community of Auckland, New Zealand.

    Science.gov (United States)

    Andajani-Sutjahjo, Sari; Liew, Theresa C H; Smith, John F; Esekielu, Iutita; Mason, Gabrielle; Tariu, Imele

    2018-04-01

    This article discusses the experiences of community volunteers' participation in a community-based participatory research project in Tāmaki, a low socio-economic and ethnically diverse suburban community within greater Auckland City, New Zealand. In the Tāmaki Community Action Research project, community volunteers were recruited and trained to conduct random household surveys (RHS) and asset mapping commissioned by community groups and government agencies in that area. The volunteers were involved in planning, coordination and ongoing governance of the project and ∼70 residents and local university students participated at different stages of the 2-year project. Over 600 RHS were completed and the volunteers' experiences were recorded in field notes, informal group discussions, daily team meetings and individual interviews and form the basis of this article. Only their experiences are discussed here, not the survey results which will be presented elsewhere. The project reflected the inherent asset-rich nature of the community via examples of individual volunteer empowerment and collective social/community capacity building. Volunteers increased their interpersonal and organizational skills, their understanding of the complexity of their community's logistics and cultural diversity, and gained an increased sense of community purpose and commitment. There was very strong endorsement of culturally sensitive research practice to recognize cultural differences and to engage productively within their richly ethnically diverse community. Full community volunteer participation in the project's governance (i.e. through design, training, implementation and ongoing consultation/management phases) was considered key to sustaining the life of project.

  9. The Research Implications of PSA Registry Errors: Data from the Veterans Health Administration.

    Science.gov (United States)

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

    2018-04-06

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

  10. High-Resolution Analyses of Human Leukocyte Antigens Allele and Haplotype Frequencies Based on 169,995 Volunteers from the China Bone Marrow Donor Registry Program.

    Science.gov (United States)

    Zhou, Xiao-Yang; Zhu, Fa-Ming; Li, Jian-Ping; Mao, Wei; Zhang, De-Mei; Liu, Meng-Li; Hei, Ai-Lian; Dai, Da-Peng; Jiang, Ping; Shan, Xiao-Yan; Zhang, Bo-Wei; Zhu, Chuan-Fu; Shen, Jie; Deng, Zhi-Hui; Wang, Zheng-Lei; Yu, Wei-Jian; Chen, Qiang; Qiao, Yan-Hui; Zhu, Xiang-Ming; Lv, Rong; Li, Guo-Ying; Li, Guo-Liang; Li, Heng-Cong; Zhang, Xu; Pei, Bin; Jiao, Li-Xin; Shen, Gang; Liu, Ying; Feng, Zhi-Hui; Su, Yu-Ping; Xu, Zhao-Xia; Di, Wen-Ying; Jiang, Yao-Qin; Fu, Hong-Lei; Liu, Xiang-Jun; Liu, Xiang; Zhou, Mei-Zhen; Du, Dan; Liu, Qi; Han, Ying; Zhang, Zhi-Xin; Cai, Jian-Ping

    2015-01-01

    Allogeneic hematopoietic stem cell transplantation is a widely used and effective therapy for hematopoietic malignant diseases and numerous other disorders. High-resolution human leukocyte antigen (HLA) haplotype frequency distributions not only facilitate individual donor searches but also determine the probability with which a particular patient can find HLA-matched donors in a registry. The frequencies of the HLA-A, -B, -C, -DRB1, and -DQB1 alleles and haplotypes were estimated among 169,995 Chinese volunteers using the sequencing-based typing (SBT) method. Totals of 191 HLA-A, 244 HLA-B, 146 HLA-C, 143 HLA-DRB1 and 47 HLA-DQB1 alleles were observed, which accounted for 6.98%, 7.06%, 6.46%, 9.11% and 7.91%, respectively, of the alleles in each locus in the world (IMGT 3.16 Release, Apr. 2014). Among the 100 most common haplotypes from the 169,995 individuals, nine distinct haplotypes displayed significant regionally specific distributions. Among these, three were predominant in the South China region (i.e., the 20th, 31st, and 81sthaplotypes), another three were predominant in the Southwest China region (i.e., the 68th, 79th, and 95th haplotypes), one was predominant in the South and Southwest China regions (the 18th haplotype), one was relatively common in the Northeast and North China regions (the 94th haplotype), and one was common in the Northeast, North and Northwest China (the 40th haplotype). In conclusion, this is the first to analyze high-resolution HLA diversities across the entire country of China, based on a detailed and complete data set that covered 31 provinces, autonomous regions, and municipalities. Specifically, we also evaluated the HLA matching probabilities within and between geographic regions and analyzed the regional differences in the HLA diversities in China. We believe that the data presented in this study might be useful for unrelated HLA-matched donor searches, donor registry planning, population genetic studies, and anthropogenesis

  11. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... Industry perspective on public clinical trial registries and results databases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...

  12. Research protocol for a randomized controlled trial of the health effects of volunteering for seniors.

    Science.gov (United States)

    Pettigrew, Simone; Jongenelis, Michelle; Newton, Robert U; Warburton, Jeni; Jackson, Ben

    2015-06-04

    Rosenberg Self-Esteem Survey, and the Global Quality of Life Scale, respectively). Secondary outcomes of interest will include attitudes to volunteering (measured via open-ended interviews) and personal growth, purpose in life, social support, and self-efficacy (measured using the Personal Growth and Purpose in Life subscales of Ryff's Psychological Well-Being Scale, the Social Provisions Scale, and the Generalized Self-Efficacy Scale, respectively). Participants will be re-assessed on these measures after 6 months. The results of this randomized controlled trial will generate new knowledge relating to the physical and psychological health benefits of different levels and types of volunteering for older people. In addition, insight will be provided into the major factors influencing the recruitment and retention of older volunteers. Understanding the full potential for volunteering to affect physical and mental well-being will provide policy makers with the evidence they require to determine appropriate investment in the volunteering sector, especially in relation to encouraging volunteering among older people who constitute an important resource for the community. Australian and New Zealand Clinical Trials Registry ACTRN12615000091505. Date registered: 3 February, 2015.

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

    Science.gov (United States)

    Ordoñana, Juan R; Sánchez Romera, Juan F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan J; Morosoli-García, José J; Pérez-Riquelme, Francisco; Martínez-Selva, José M

    Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies basically compare the degree of phenotypical similarity between monozygotic and dizygotic twin pairs. In addition to the traditional estimate of heritability, this kind of registry enables a wide variety of analyses which are unique due to the characteristics of the sample. The Murcia Twin Registry is population-based and focused on the analysis of health-related behaviour. The observed prevalence of health problems is comparable to that of other regional and national reference samples, which guarantees its representativeness. Overall, the characteristics of the Registry facilitate developing various types of research as well as genetically informative designs, and collaboration with different initiatives and consortia. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  14. #DDOD Use Case: Improve National Death Registry for use with outcomes research

    Data.gov (United States)

    U.S. Department of Health & Human Services — SUMMARY DDOD use case request to improve National Death Registry for use with outcomes research. WHAT IS A USE CASE? A “Use Case” is a request that was made by the...

  15. Design, development and deployment of a Diabetes Research Registry to facilitate recruitment in clinical research.

    Science.gov (United States)

    Tan, Meng H; Bernstein, Steven J; Gendler, Stephen; Hanauer, David; Herman, William H

    2016-03-01

    A major challenge in conducting clinical trials/studies is the timely recruitment of eligible subjects. Our aim is to develop a Diabetes Research Registry (DRR) to facilitate recruitment by matching potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their electronic health records (EHR). A committee with expertise in diabetes, quality improvement, information technology, and informatics designed and developed the DRR. Using a hybrid approach, we identified and consented patients interested in research, abstracted their EHRs to assess common eligibility criteria, and contacted them about their interest in participating in specific studies. Investigators submit their requests with study entry criteria to the DRR which then provides a list of potential subjects who may be directly contacted for their study. The DRR meets all local, regional and federal regulatory requirements. After 5 years, the DRR has over 5000 registrants. About 30% have type 1 diabetes and 70% have type 2 diabetes. There are almost equal proportions of men and women. During this period, 31 unique clinical studies from 19 unique investigators requested lists of potential subjects for their studies. Eleven grant applications from 10 unique investigators used aggregated counts of potentially eligible subjects in their applications. The DRR matches potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their EHR. By providing large lists of potentially eligible study subjects quickly, the DRR facilitated recruitment in 31 clinical studies. Copyright © 2016 Elsevier Inc. All rights reserved.

  16. Classical Natural History: the importance of volunteers in collection management and research

    NARCIS (Netherlands)

    Reumer, J.W.F.; Post, K.

    2010-01-01

    As a result of increasing budget constraints and decreasing interest in classical natural history, the work effort of volunteer researchers and the need for private funding are of growing importance. A brief historical background is provided, showing the decreasing interest in the subject shown by

  17. A federated semantic metadata registry framework for enabling interoperability across clinical research and care domains.

    Science.gov (United States)

    Sinaci, A Anil; Laleci Erturkmen, Gokce B

    2013-10-01

    In order to enable secondary use of Electronic Health Records (EHRs) by bridging the interoperability gap between clinical care and research domains, in this paper, a unified methodology and the supporting framework is introduced which brings together the power of metadata registries (MDR) and semantic web technologies. We introduce a federated semantic metadata registry framework by extending the ISO/IEC 11179 standard, and enable integration of data element registries through Linked Open Data (LOD) principles where each Common Data Element (CDE) can be uniquely referenced, queried and processed to enable the syntactic and semantic interoperability. Each CDE and their components are maintained as LOD resources enabling semantic links with other CDEs, terminology systems and with implementation dependent content models; hence facilitating semantic search, much effective reuse and semantic interoperability across different application domains. There are several important efforts addressing the semantic interoperability in healthcare domain such as IHE DEX profile proposal, CDISC SHARE and CDISC2RDF. Our architecture complements these by providing a framework to interlink existing data element registries and repositories for multiplying their potential for semantic interoperability to a greater extent. Open source implementation of the federated semantic MDR framework presented in this paper is the core of the semantic interoperability layer of the SALUS project which enables the execution of the post marketing safety analysis studies on top of existing EHR systems. Copyright © 2013 Elsevier Inc. All rights reserved.

  18. Validation of the "United Registries for Clinical Assessment and Research" (UR-CARE), a European online registry for clinical care and research in Inflammatory Bowel Disease

    DEFF Research Database (Denmark)

    Burisch, Johan; Gisbert, Javier P; Siegmund, Britta

    2018-01-01

    Background: The "United Registries for Clinical Assessment and Research" (UR-CARE) database is an initiative of the European Crohn's and Colitis Organisation (ECCO) to facilitate daily patient care and research studies in inflammatory bowel disease (IBD). Herein, we sought to validate the database...... by using fictional case histories of patients with IBD that were to be entered by observers of varying experience in IBD. Methods: A total of 19 observers entered 5 patient case histories into the database. After six weeks, all observers entered the same case histories again. For each case history, 20 key...... to the expected level of validity. Re-test reliability was assessed using McNemar's test. Results: For all case histories, the overall proportion of correctly entered items and their confidence intervals included the target of 90% [Case 1: 92% (88-94%); Case 2: 87% (83-91%); Case 3: 93% (90-95%); Case 4: 97% (94...

  19. [Leather dust and systematic research on occupational tumors: the national and regional registry TUNS].

    Science.gov (United States)

    Mensi, Carolina; Sieno, Claudia; Consonni, Dario; Riboldi, Luciano

    2012-01-01

    The sinonasal cancer (SNC) are a rare tumors characterized by high occupational etiologic fraction. For this reason their incidence and etiology can be actively monitored by a dedicated cancer registry. The National Registry of these tumours is situated at the Italian Institute for Occupational Safety and Prevention (ISPESL) and is based on Regional Operating Centres (ROCs). In Lombardy Region the ROC has been established at the end of 2007 with the purpose to make a systematic surveillance and therefore to support in the most suitable way the scientific research and the prevention actions in the high risk working sectors. The aims of this surveillance are: to estimate the regional incidence of SNC, to define different sources of occupational and environmental exposure both known (wood, leather, nickel, chromium) and unknown. The registry collects all the new incident cases of epithelial SNC occurring in residents in Lombardy Region since 01.01.2008. The regional Registry is managed according to National Guidelines. Until January 2010 we received 596 cases of suspected SNC; only 91 (15%) of these were actually incident cases according to the inclusion criteria of the Registry, and they were preferentially adenocarcinoma and squamous carcinoma. In 2008 the regional age-standardized incidence rate of SNC for males and females, respectively, is 0.8 and 0.5 per 100,000. Occupational or environmental exposure to wood or leather dust is ascertained in over the 50% of cases. The occupational exposure to leather dust was duo to work in shoe factories. Our preliminary findings confirm that occupational exposure to wood and leather dusts are the more relevant risk factors for SNC. The study of occupational sectors and job activity in cases without such exposure could suggest new etiologic hypothesis.

  20. Making research data repositories visible: the re3data.org Registry.

    Science.gov (United States)

    Pampel, Heinz; Vierkant, Paul; Scholze, Frank; Bertelmann, Roland; Kindling, Maxi; Klump, Jens; Goebelbecker, Hans-Jürgen; Gundlach, Jens; Schirmbacher, Peter; Dierolf, Uwe

    2013-01-01

    Researchers require infrastructures that ensure a maximum of accessibility, stability and reliability to facilitate working with and sharing of research data. Such infrastructures are being increasingly summarized under the term Research Data Repositories (RDR). The project re3data.org-Registry of Research Data Repositories-has begun to index research data repositories in 2012 and offers researchers, funding organizations, libraries and publishers an overview of the heterogeneous research data repository landscape. In July 2013 re3data.org lists 400 research data repositories and counting. 288 of these are described in detail using the re3data.org vocabulary. Information icons help researchers to easily identify an adequate repository for the storage and reuse of their data. This article describes the heterogeneous RDR landscape and presents a typology of institutional, disciplinary, multidisciplinary and project-specific RDR. Further the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.

  1. Making research data repositories visible: the re3data.org Registry.

    Directory of Open Access Journals (Sweden)

    Heinz Pampel

    Full Text Available Researchers require infrastructures that ensure a maximum of accessibility, stability and reliability to facilitate working with and sharing of research data. Such infrastructures are being increasingly summarized under the term Research Data Repositories (RDR. The project re3data.org-Registry of Research Data Repositories-has begun to index research data repositories in 2012 and offers researchers, funding organizations, libraries and publishers an overview of the heterogeneous research data repository landscape. In July 2013 re3data.org lists 400 research data repositories and counting. 288 of these are described in detail using the re3data.org vocabulary. Information icons help researchers to easily identify an adequate repository for the storage and reuse of their data. This article describes the heterogeneous RDR landscape and presents a typology of institutional, disciplinary, multidisciplinary and project-specific RDR. Further the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.

  2. Working with Volunteers.

    Science.gov (United States)

    Rowland, Virginia; And Others

    1990-01-01

    This special section features research concluding that volunteers find the time because they believe they have more time to help (Rowland); an extension program using volunteer master teachers (Feather); use of volunteer marketing professionals (Fromer); retaining volunteers through leadership training (Balliette, Smith); "problem" volunteers and…

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

    NARCIS (Netherlands)

    Siesling, Sabine; Louwman, W.J.; Kwast, A.; van den Hurk, C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.

    2015-01-01

    Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the

  4. Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

    Science.gov (United States)

    Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

    2017-11-01

    The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

  5. The 2016 American Academy of Ophthalmology IRIS®Registry (Intelligent Research in Sight) Database: Characteristics and Methods.

    Science.gov (United States)

    Chiang, Michael F; Sommer, Alfred; Rich, William L; Lum, Flora; Parke, David W

    2018-01-13

    To describe the characteristics of the patient population included in the 2016 IRIS ® Registry (Intelligent Research in Sight) database for analytic aims. Description of a clinical data registry. The 2016 IRIS Registry database consists of 17 363 018 unique patients from 7200 United States-based ophthalmologists in the United States. Electronic health record (EHR) data were extracted from the participating practices and placed into a clinical database. The approach can be used across dozens of EHR systems. Demographic characteristics. The 2016 IRIS Registry database includes data about patient demographics, top-coded disease conditions, and visit rates. The IRIS Registry is a unique, large, real-world data set that is available for analytics to provide perspectives and to learn about current ophthalmic care and treatment outcomes. The IRIS Registry can be used to answer questions about practice patterns, use, disease prevalence, clinical outcomes, and the comparative effectiveness of different treatments. Limitations of the data are the same limitations associated with EHR data in terms of documentation errors or missing data and the lack of images. Currently, open access to the database is not available, but there are opportunities for researchers to submit proposals for analyses, for example through a Research to Prevent Blindness and American Academy of Ophthalmology Award for IRIS Registry Research. Copyright © 2017 American Academy of Ophthalmology. Published by Elsevier Inc. All rights reserved.

  6. A volunteer alcohol consumption reduction campaign: participatory action research among Thai women in the Isaan region.

    Science.gov (United States)

    Jongudomkarn, Darunee

    2014-01-01

    Cancer is one of the leading causes of death in Thailand as well as other countries. Evidences from studies in Asia show that alcohol consumption has been linked to an increased risk for various types of cancer. In the qualitative participatory action research presented here, the possibilities of a volunteer women's movement to reduce harmful alcohol consumption by facilitating the creation of emancipatory knowledge in the Thai-Isaan community was explored. During in-depth interviews with 10 female volunteer participants, the following themes emerged: merit making, developing a sense of personal empowerment, and the experience of participating in an action plan that utilized various strategies. The project activities empowered participants to create and share knowledge which was then applied toward action for change. Adoption of this type of program by local health care providers to reduce health problems and risks related to alcohol misuse in similar contexts and cultures is recommended.

  7. re3data.org - a global registry of research data repositories

    Science.gov (United States)

    Pampel, Heinz; Vierkant, Paul; Elger, Kirsten; Bertelmann, Roland; Witt, Michael; Schirmbacher, Peter; Rücknagel, Jessika; Kindling, Maxi; Scholze, Frank; Ulrich, Robert

    2016-04-01

    re3data.org - the registry of research data repositories lists over 1,400 research data repositories from all over the world making it the largest and most comprehensive online catalog of research data repositories on the web. The registry is a valuable tool for researchers, funding organizations, publishers and libraries. re3data.org provides detailed information about research data repositories, and its distinctive icons help researchers to easily identify relevant repositories for accessing and depositing data sets [1]. Funding agencies, like the European Commission [2] and research institutions like the University of Bielefeld [3] already recommend the use of re3data.org in their guidelines and policies. Several publishers and journals like Copernicus Publications, PeerJ, and Nature's Scientific Data recommend re3data.org in their editorial policies as a tool for the easy identification of appropriate data repositories to store research data. Project partners in re3data.org are the Library and Information Services department (LIS) of the GFZ German Research Centre for Geosciences, the Computer and Media Service at the Humboldt-Universität zu Berlin, the Purdue University Libraries and the KIT Library at the Karlsruhe Institute of Technology (KIT). After its fusion with the U.S. American DataBib in 2014, re3data.org continues as a service of DataCite from 2016 on. DataCite is the international organization for the registration of Digital Object Identifiers (DOI) for research data and aims to improve their citation. The poster describes the current status and the future plans of re3data.org. [1] Pampel H, et al. (2013) Making Research Data Repositories Visible: The re3data.org Registry. PLoS ONE 8(11): e78080. doi:10.1371/journal.pone.0078080. [2] European Commission (2015): Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020. Available: http://ec.europa.eu/research/participants/data/ref/h2020/grants_manual/hi/oa_pilot/h2020-hi

  8. Down syndrome: issues to consider in a national registry, research database and biobank.

    Science.gov (United States)

    McCabe, Linda L; McCabe, Edward R B

    2011-01-01

    As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources. Copyright © 2011 Elsevier Inc. All rights reserved.

  9. The Research on Medical Education Outcomes (ROMEO) Registry: Addressing Ethical and Practical Challenges of Using "Bigger," Longitudinal Educational Data.

    Science.gov (United States)

    Gillespie, Colleen; Zabar, Sondra; Altshuler, Lisa; Fox, Jaclyn; Pusic, Martin; Xu, Junchuan; Kalet, Adina

    2016-05-01

    Efforts to evaluate and optimize the effectiveness of medical education have been limited by the difficulty of designing medical education research. Longitudinal, epidemiological views of educational outcomes can help overcome limitations, but these approaches require "bigger data"-more learners, sources, and time points. The rich data institutions collect on students and residents can be mined, however, ethical and practical barriers to using these data must first be overcome. In 2008, the authors established the Research on Medical Education Outcomes (ROMEO) Registry, an educational data registry modeled after patient registries. New York University School of Medicine students, residents, and fellows provide consent for routinely collected educational, performance, quality improvement, and clinical practice data to be compiled into a deidentified, longitudinal database. As of January 2015, this registry included 1,225 residents and fellows across 12 programs (71% consent rate) and 841 medical students (86% consent rate). Procedures ensuring voluntary informed consent are essential to ethical enrollment and data use. Substantial resources are required to provide access to and manage the data. The registry supports educational scholarship. Seventy-two studies using registry data have been presented or published. These focus on evaluating the curriculum, quality of care, and measurement quality and on assessing needs, competencies, skills development, transfer of skills to practice, remediation patterns, and links between education and patient outcomes. The authors are working to integrate assessment of relevant outcomes into the curriculum, maximize both the quantity and quality of the data, and expand the registry across institutions.

  10. Construction of a US fibromyalgia registry using the Fibromyalgia Research Survey criteria.

    Science.gov (United States)

    Whipple, Mary O; McAllister, Samantha J; Oh, Terry H; Luedtke, Connie A; Toussaint, Loren L; Vincent, Ann

    2013-10-01

    Utilizing billing records, we identified patients seen at Mayo Clinic with a diagnosis or history of fibromyalgia who were then contacted for enrollment in a fibromyalgia research registry. Fibromyalgia was confirmed through medical record review. Eligible patients were mailed an invitation that included a demographic questionnaire and the Fibromyalgia Research Survey. The Fibromyalgia Research Survey yields a widespread pain score (scale range 0-19) and a symptom severity score (scale range 0-12). A total of 4,034 patients returned the completed survey; 92.8% were female, their mean age was 57.4 (±13.4), and 83.7% were from the Midwest region of the United States. The mean widespread pain score for all participants was 11.3 (±4.5) and the mean symptom severity score was 8.2 (±2.4), indicating moderate-to-severe fibromyalgia symptoms, which is not unusual for patients presenting to a tertiary care center. Using a systematic process, we describe the creation of a fibromyalgia registry for future research. © 2013 Wiley Periodicals, Inc.

  11. Registry and health insurance claims data in vascular research and quality improvement.

    Science.gov (United States)

    Behrendt, Christian-Alexander; Heidemann, Franziska; Rieß, Henrik Christian; Stoberock, Konstanze; Debus, Sebastian Eike

    2017-01-01

    The expansion of procedures in multidisciplinary vascular medicine has sparked a controversy regarding measures of quality improvement. In addition to primary registries, the use of health insurance claims data is becoming of increasing importance. However, due to the fact that health insurance claims data are not collected for scientific evaluation but rather for reimbursement purposes, meticulous validation is necessary before and during usage in research and quality improvement matters. This review highlights the advantages and disadvantages of such data sources. A recent comprehensive expert opinion panel examined the use of health insurance claims data and other administrative data sources in medicine. Results from several studies concerning the validity of administrative data varied significantly. Validity of these data sources depends on the clinical relevance of the diagnoses considered. The rate of implausible information was 0.04 %, while the validity of the considered diagnoses varied between 80 and 97 % across multiple validation studies. A matching study between health insurance claims data of the third-largest German health insurance provider, DAK-Gesundheit, and a prospective primary registry of the German Society for Vascular Surgery demonstrated a good level of validity regarding the mortality of endovascular and open surgical treatment of abdominal aortic aneurysm in German hospitals. In addition, a large-scale international comparison of administrative data for the same disorder presented important results in treatment reality, which differed from those from earlier randomized controlled trials. The importance of administrative data for research and quality improvement will continue to increase in the future. When discussing the internal and external validity of this data source, one has to distinguish not only between its intended usage (research vs. quality improvement), but also between the included diseases and/or treatment procedures

  12. Current status and future prospect of radiation exposure to research volunteers in institutes with nuclear medicine. The report of questionnaires regarding radiation exposures to volunteers in clinical researches and clinical trials

    International Nuclear Information System (INIS)

    2010-01-01

    There has been no guide of authorized radiological protection system in Japan when volunteers receive radionuclide administration in clinical research or phase I - IV studies. The purpose of this report was to depict issues on institutional radiological protection system for establishing the guide. We accumulated full-filled questionnaires regarding institutional radiological protection system of human subjects in 82 hospitals in which clinical researches or phase I - IV studies underwent to be subjected to radionuclide administrated volunteers in recent two years. We analyzed regarding (1) research content, (2) what committee approval of research using radionuclide administrated volunteer, (3) selection of the volunteers, (4) regulatory dose of administrated radionuclide, and (5) informed consent. Normal volunteers are subjected in clinical researches as well as phase-I study and microdose study. The researches subjected to normal volunteers needed with approval of institutional ethic committee in 64 (78%) hospitals, others than ethic committee in 9 (10%), and unknown in 2 (2%). In remaining 7 (8%), both ethic and other committees were described. No one with radiological knowledge included the committees in 23 hospitals (28%), of 15 had no consultation system regarding radiological protection. In all hospitals, regulatory dose in human subjects is less than 50 mSv and sufficient informed consent regarding the protection was obtained. In Japan, researches subjected to radionuclide administrated volunteers are performed by authorization of institutional ethic committees. Administrated radionuclide dose in them are less than upper limits of regulatory system of ICRP, USA and England because the committees include physicians, technologists and pharmaceutics with knowledge of radiological protection. But some hospitals have no committees authorize the research because they have no idea of authorized committees or cannot establish the committees. We recommend that

  13. Collecting Research-Grade Data With Volunteers: A Case Study from Montana's Wilderness to the Sea

    Science.gov (United States)

    Kautz, M.

    2016-12-01

    Collecting Research-Grade Data With Volunteers: A Case Study from Montana's Wilderness Waterways to the SeaKautz, M (1), Barrows, A (2)(1) Adventurers and Scientists for Conservation. Bozeman, Montana, United States - mike@adventureandscience.org(2) College of the Atlantic. Bar Harbor, Maine, United States - abby.barrows@coa.eduSince World War II, global plastic production and consumption has increased dramatically. Plastics released into the environment may break down into smaller pieces through physical, biological and chemical processes. These small particles, referred to as microplastics, are less than 5mm in size and are a pollutant of emerging concern in both marine and freshwater environments. Since 2013, researcher Abigail Barrows and ASC have been conducting a global survey of microplastic distribution by utilizing the outdoor skills of adventurers. ASC recruits, trains and manages volunteers with specialized skills (surfers, long-distance open-ocean rowers, sailors, hikers, mountaineers, kayakers and others) to collect marine and freshwater samples from remote environments. Of the nearly 1500 samples collected worldwide to date (from areas as remote as the edge of Antarctica and the wilderness of Alaska) 90% contain microplastic, with an average of 8 pieces/1L of water. Samples are also in preparation for micro-Raman spectroscopy to determine source materials. In 2016 and 2017 the survey is focusing on freshwater around the globe. In the United States samples are being collected from the length of the 4th longest river system in the world, the Missouri-Mississippi. ASC has adventurous citizen scientists sampling in the mountain headwaters near Yellowstone National Park to the delta of the Mississippi River near New Orleans. This citizen-driven observation allows research at a geographic scale simply not possible through traditional methods. ASC works closely with Barrows and other researchers to develop water sampling protocols that allow volunteers to

  14. Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks

    Science.gov (United States)

    Gibson, Elaine; Brazil, Kevin; Coughlin, Michael D; Emerson, Claudia; Fournier, Francois; Schwartz, Lisa; Szala-Meneok, Karen V; Weisbaum, Karen M; Willison, Donald J

    2008-01-01

    Background The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Methods Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. Results There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Conclusion Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding

  15. Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks

    Directory of Open Access Journals (Sweden)

    Schwartz Lisa

    2008-11-01

    Full Text Available Abstract Background The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Methods Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. Results There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Conclusion Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher

  16. Ten years of METEOR (an international rheumatoid arthritis registry): development, research opportunities and future perspectives.

    Science.gov (United States)

    Bergstra, Sytske Anne; Machado, Pedro M M C; van den Berg, Rosaline; Landewé, Robert B M; Huizinga, Tom W J

    2016-01-01

    Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research opportunities and future perspectives are described. The METEOR tool is a free, online, internationally available tool in which daily practice visits of all rheumatoid arthritis patients visiting a rheumatologist can be registered. In the tool, disease characteristics, patient- and physician-reported outcomes and prescribed treatment could be entered. These can be subsequently displayed in powerful graphics, facilitating treatment decisions and patient-physician interactions. An upload facility is also available, by which data from local electronic health record systems or registries can be integrated into the METEOR database. This is currently being actively used in, among other countries, the Netherlands, Portugal and India. Since an increasing number of hospitals use electronic health record systems, the upload facility is being actively used by an increasing number of sites, enabling them to benefit from the benchmark and research opportunities of METEOR. Enabling a connection between local registries and METEOR is a well established but time-consuming process for which an IT-specialist of METEOR and the local registry are necessary. However, once this process has been finished, data can be uploaded regularly and relatively easily according to a pre-specified format. The METEOR database currently contains data from >39,000 patients and >200,000 visits, from 32 different countries and is ever increasing. Continuous efforts are being undertaken to increase the quality of data in the database. Since METEOR was founded 10 years ago, many rheumatologists worldwide have used the METEOR tool to follow-up their patients and improve the quality of care they provide to their patients. Combined with uploaded data, this has led to an extensive growth of the database. It now offers a unique

  17. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix MaryAnn Foote Clinical trial registries and publication of results - a primer . . . . . . . . . . . . . . . . . . 1 Ana Marušić and Charlotte Haug The journal...

  18. Motivation of management students to engage in volunteering (in the light of research results

    Directory of Open Access Journals (Sweden)

    Stankiewicz Janina

    2017-05-01

    Full Text Available Market of volunteers in Poland, especially those ones with specialized skills, is limited. An important reservoir of volunteer work are the universities. Non-governmental organizations should consider sustained cooperation with them. Volunteers predisposed to provide administrative support could be sought among the students of management. This article aims to answer the following questions: Are students of management want to get involved in the activities of non-governmental organizations? What are the motives of involvement in voluntary dominate among them? What benefi ts do they see, in collaboration with NGO’s? What actions can take the managers of these organizations to motivate volunteers?

  19. Developing a Dementia Research Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme

    Directory of Open Access Journals (Sweden)

    Lowery David

    2011-01-01

    Full Text Available Abstract Aim To describe the development of a dementia research registry, outlining the conceptual, practical and ethical challenges, and to report initial experiences of recruiting people with dementia to it from primary and secondary care. Background Women, the oldest old and ethnic minorities have been under-represented in clinical trials in dementia. Such under-representation biases estimates of absolute effect, absolute harm and cost-effectiveness. Research on dementia should include patient populations that more exactly reflect the population at risk. One of the impediments to this is the lack of a suitable tool for identification of patients suitable for studies. Construction & contents A technology development methodology was used to develop a registry of people with dementia and their carers. This involved phases of modelling and prototype creation, 'bench testing' the prototype with experts and then 'field testing' the refined prototype in exemplar sites. The evaluation of the field testing described here is based on a case study methodology. Utility This case study suggests that construction and population of a dementia research registry is feasible, but initial development is complex because of the ethical and organisational difficulties. Recruitment from primary care is particularly costly in terms of staff time and only identifies a very small number of people with dementia who were not already known to specialist services. Recruiting people with dementia through secondary care is a resource intensive process that takes up to six months to complete. Identifying the components of a minimum dataset was easy but its usefulness for pre-screening potential research populations has yet to be established. Acceptance rates are very high in the first clinic to recruit to the registry, but this may reflect the efforts of registry 'champions'. Discussion and Conclusions Easier recruitment may perpetuate potential selection biases and we are

  20. Database and Registry Research in Orthopaedic Surgery: Part I: Claims-Based Data.

    Science.gov (United States)

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

    2015-08-05

    The use of large-scale national databases for observational research in orthopaedic surgery has grown substantially in the last decade, and the data sets can be grossly categorized as either administrative claims or clinical registries. Administrative claims data comprise the billing records associated with the delivery of health-care services. Orthopaedic researchers have used both government and private claims to describe temporal trends, geographic variation, disparities, complications, outcomes, and resource utilization associated with both musculoskeletal disease and treatment. Medicare claims comprise one of the most robust data sets used to perform orthopaedic research, with >45 million beneficiaries. The U.S. government, through the Centers for Medicare & Medicaid Services, often uses these data to drive changes in health policy. Private claims data used in orthopaedic research often comprise more heterogeneous patient demographic samples, but allow longitudinal analysis similar to that offered by Medicare claims. Discharge databases, such as the U.S. National Inpatient Sample, provide a wide national sampling of inpatient hospital stays from all payers and allow analysis of associated adverse events and resource utilization. Administrative claims data benefit from the high patient numbers obtained through a majority of hospitals. Using claims, it is possible to follow patients longitudinally throughout encounters irrespective of the location of the institution delivering health care. Some disadvantages include lack of precision of ICD-9 (International Classification of Diseases, Ninth Revision) coding schemes. Much of these data are expensive to purchase, complicated to organize, and labor-intensive to manipulate--often requiring trained specialists for analysis. Given the changing health-care environment, it is likely that databases will provide valuable information that has the potential to influence clinical practice improvement and health policy for

  1. The psychological profile of parents who volunteer their children for clinical research: a controlled study.

    OpenAIRE

    Harth, S C; Johnstone, R R; Thong, Y H

    1992-01-01

    Three standard psychometric tests were administered to parents who volunteered their children for a randomised, double-blind placebo-controlled trial of a new asthma drug and to a control group of parents whose children were eligible for the trial but had declined the invitation. The trial took place at a children's hospital in Australia. The subjects comprised 68 parents who had volunteered their children and 42 who had not, a participation rate of 94 per cent and 70 per cent, respectively. ...

  2. The chances of successful recruitment of volunteers among management students (in the light of empirical research

    Directory of Open Access Journals (Sweden)

    Stankiewicz Janina

    2016-12-01

    Full Text Available Non-profit organizations pursue social objectives. They base on the work of volunteers - people who devote their time to help others without expecting in return material benefits. They can perform various works, including those ones which require knowledge and skills in the area of management. It is possible to find such competences among the students of Management. The aim of the article is to discuss some opportunities of recruitment volunteers among that target market.

  3. Qualitative Research Methods in Visual Communication. Case Study: Visual Networks in the Promotional Videos of the European Year of Volunteering

    Directory of Open Access Journals (Sweden)

    Camelia Cmeciu

    2013-05-01

    Full Text Available European Years are a means of promoting European issues at a macro and micro-level. The objective of this paper is to provide the visual differences in the framing of the issue of volunteering at a European and national level. The approach focuses on a blending of two qualitative research methods in visual communication: ATLAS.ti (computer assisted/ aided qualitative data analysis software and social semiotics. The results of our analysis highlight two network views on volunteering promoted through videos, a salience of transactional processes in the implementation of volunteering at a European and national level, and a classification of various types of social practices specific to Romania. This study provides an insight into the way in which two different qualitative methods may be combined in order to provide a visual representation and interpretation to a European issue.

  4. Prospects for research in haemophilia with real-world data-An analysis of German registry and secondary data.

    Science.gov (United States)

    Schopohl, D; Bidlingmaier, C; Herzig, D; Klamroth, R; Kurnik, K; Rublee, D; Schramm, W; Schwarzkopf, L; Berger, K

    2018-02-28

    Open questions in haemophilia, such as effectiveness of innovative therapies, clinical and patient-reported outcomes (PROs), epidemiology and cost, await answers. The aim was to identify data attributes required and investigate the availability, appropriateness and accessibility of real-world data (RWD) from German registries and secondary databases to answer the aforementioned questions. Systematic searches were conducted in BIOSIS, EMBASE and MEDLINE to identify non-commercial secondary healthcare databases and registries of patients with haemophilia (PWH). Inclusion of German patients, type of patients, data elements-stratified by use in epidemiology, safety, outcomes and health economics research-and accessibility were investigated by desk research. Screening of 676 hits, identification of four registries [national PWH (DHR), national/international paediatric (GEPARD, PEDNET), international safety monitoring (EUHASS)] and seven national secondary databases. Access was limited to participants in three registries and to employees in one secondary database. One registry asks for PROs. Limitations of secondary databases originate from the ICD-coding system (missing: severity of haemophilia, presence of inhibitory antibodies), data protection laws and need to monitor reliability. Rigorous observational analysis of German haemophilia RWD shows that there is potential to supplement current knowledge and begin to address selected policy goals. To improve the value of existing RWD, the following efforts are proposed: ethical, legal and methodological discussions on data linkage across different sources, formulation of transparent governance rules for data access, redefinition of the ICD-coding, standardized collection of outcome data and implementation of incentives for treatment centres to improve data collection. © 2018 John Wiley & Sons Ltd.

  5. United States Transuranium and Uranium Registries: Researching radiation protection. USTUR annual report for February 1, 1999 through January 31, 2000

    International Nuclear Information System (INIS)

    Ehrhart, Susan M.; Filipy, Ronald E.

    2000-01-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 1999 through January 2000

  6. United States Transuranium and Uranium Registries: Researching radiation protection. USTUR annual report for February 1, 1999 through January 31, 2000

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed.)

    2000-07-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 1999 through January 2000.

  7. Screening electrocardiograms in psychiatric research: implications for physicians and healthy volunteers.

    Science.gov (United States)

    Pavletic, A J; Pao, M; Pine, D S; Luckenbaugh, D A; Rosing, D R

    2014-01-01

    While there is controversy regarding utility of screening electrocardiograms (ECGs) in competitive athletes and children exposed to psychostimulants, there is no data on the use of screening ECGs in psychiatric research. We aimed to examine the prevalence and clinical significance of ECG abnormalities and their impact on eligibility for studies. We analysed 500 consecutive ECG reports from physically healthy volunteers who had a negative cardiac history, normal cardiovascular examination and no other significant medical illnesses. For the purpose of this report, all ECGs were over-read by one cardiologist. The mean age of our cohort was 28.3 ± 8.0 years. A total of 112 (22.4%) ECGs were reported as abnormal (14.2%) or borderline (8.2%). These abnormalities were considered clinically insignificant in all but eight subjects (1.6%) who underwent evaluation with an echocardiogram. All echocardiograms were normal. No subject was excluded from studies. After the over-reading, no abnormalities or isolated bradycardia were present in 37 of 112 (33%) ECGs that were initially reported as abnormal or borderline, while minor abnormalities were found in 7 of 204 (3.4%) ECGs that were reported as normal. Although screening ECGs did not detect significant cardiac pathology or affect eligibility for our studies, over 20% of subjects were labelled as having an abnormal or borderline ECG which was incorrect in one-third of cases. Strategies to minimise unintended consequences of screening are discussed. Published 2013. This article is a U.S. Government work and is in the public domain in the USA.

  8. Motivations for Deceased Organ Donation Among Volunteers in China: A Qualitative Research Study.

    Science.gov (United States)

    Yin, Zhike; Liu, Shan; Yan, Jin; Liu, Jia

    2016-06-09

    BACKGROUND To align with guiding principles on human organ and tissue transplantation published by the World Health Organization (WHO), the Red Cross Society of China (RCSC) launched a new nationwide organ donation program in 2010 to recruit organ donation volunteers. Despite severe shortage of donated organs, there is a very low rate of volunteering for organ donation among the Chinese population (only 0.03 donors per million population) in the national program. Motivating organ donation is the key to the success of organ transplantation in China. MATERIAL AND METHODS Semi-structured 45- to 60-min interviews were conducted among 34 volunteers. Data analysis was performed with Nvivo 8.0 software. RESULTS Six motivations for organ donation were identified: helping others/altruism, fulfilling long-cherished wishes, reducing the burdens, making the best use of everything, giving back to society, and life extension. Factors affecting the motivation of organ donation among volunteers in China included traditional values, personal experiences, role model effect, family support, and problems in the donation system. Possible strategies to improve organ donation included fostering a scientific concept of the body and death, focusing donation promotion efforts on certain groups, and simplifying the process of organ donation. CONCLUSIONS There are multiple reasons for Chinese people to register for organ donation, with helping others as the central motivation.

  9. The EuroMyositis registry

    DEFF Research Database (Denmark)

    Lilleker, James B; Vencovsky, Jiri; Wang, Guochun

    2018-01-01

    AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...

  10. Diabetes and Asthma Case Identification, Validation, and Representativeness When Using Electronic Health Data to Construct Registries for Comparative Effectiveness and Epidemiologic Research

    Science.gov (United States)

    Desai, Jay R.; Wu, Pingsheng; Nichols, Greg A.; Lieu, Tracy A.; O’Connor, Patrick J.

    2015-01-01

    Advances in health information technology and widespread use of electronic health data offer new opportunities for development of large scale multisite disease-specific patient registries. Such registries use existing data, can be constructed at relatively low cost, include large numbers of patients, and once created can be used to address many issues with a short time between posing a question and obtaining an answer. Potential applications include comparative effectiveness research, public health surveillance, mapping and improving quality of clinical care, and others. This paper describes selected conceptual and practical challenges related to development of multisite diabetes and asthma registries, including development of case definitions, validation of case identification methods, variation in electronic health data sources; representativeness of registry populations, including the impact of attrition. Specific challenges are illustrated with data from actual registries. PMID:22692256

  11. Volunteers in Sport Organizations

    Directory of Open Access Journals (Sweden)

    VESNA CILERDZIC

    2010-01-01

    Full Text Available The research is done in order to describe student’s attitudes on volunteering in sport. The sample consists of 231 students from Serbia, average age 21,06±3,12years. They were from eight colleges and faculties. For nominal and ordinal variables, frequencies were determined. Many of examined students have volunteering experiences. The results confirm that students believe that we live in a society which his generally thought only to its own benefit; they think that volunteering can not solve the problems in society; that people do not have enough experience with volunteering and people do not have time to volunteering; volunteering is for young people; in their family and among friends, there are no volunteers; everyone could be volunteer only if that wishes; do not believe that volunteering is a waste of time and it helps in future career. The prevalent number of students, regardless of the Faculty which they belong, rarely volunteered in areas outside of sport. Results also shows that students from sport faculties have less experience in volunteering in sport than students from other faculties, but this difference is not dramatic.

  12. Taenia solium Infection in Peru: A Collaboration between Peace Corps Volunteers and Researchers in a Community Based Study

    Science.gov (United States)

    Watts, Nathaniel S.; Pajuelo, Monica; Clark, Taryn; Loader, Maria-Cristina I.; Verastegui, Manuela R.; Sterling, Charles; Friedland, Jon S.; Garcia, Hector H.; Gilman, Robert H.

    2014-01-01

    Background Neurocysticercosis is a leading cause of seizures and epilepsy in most of the world, and it occurs when Taenia solium larval cysts infect the central nervous system. T. solium tapeworm infection is endemic in much of Peru, but there are scarce data on the prevalence in many rural highland communities where it is likely to be hyper-endemic. Peace Corps Volunteers live and work in these communities; however, to our knowledge, they have not been used to facilitate public health research. Materials and Methods We utilized Peace Corps Volunteers to estimate the prevalence of T. solium tapeworm infection in seven rural communities in northern Peru. A convenience non-random sampling frame was used. Peace Corps Volunteers facilitated the collection of stool samples (N = 2,328), which were analyzed by sedimentation and microscopy. Niclosamide treatment and purgation preceded species identification, which was done by PCR-REA. Results Taenia sp. egg-positive stool samples were found in three of the seven communities we surveyed. The overall prevalence of Taenia sp. egg positivity was 2.1% (49/2,328) (95% CI = 1.6–2.8%) with prevalence up to 4.3% (42/977) (95% CI = 3.1–5.8%) by community. All 34 of the specimens tested by PCR-REA were T. solium. The overall prevalence of T. solium tapeworm infection was 1.5% (34/2,328) (95% CI = 1.0–2.0%). Prevalence up to 2.9% (28/977) (95% CI = 1.9–4.1%) by community was observed. Conclusion/Significance This study recorded high T. solium tapeworm prevalence, and identified hyper-endemic rural communities. It demonstrates that synergy between researchers and Peace Corps Volunteers can be an effective means to conducting large-scale, community-based studies in remote areas of Peru. PMID:25469506

  13. Volunteering of seniors in community

    OpenAIRE

    Stropková, Andrea

    2017-01-01

    The diploma thesis deals with the theme of volunteering of seniors in the community. The work focuses on the specifics of volunteering of seniors, emphasizing the benefits of volunteering for participating seniors and how to identify them with other groups of people. Using a qualitative research work, it examines on a sample of eight respondents how these senior volunteers perceive the benefits of volunteering, how they relate to the geographical location in which they work, and what communit...

  14. Reference values for peak oxygen uptake: cross-sectional analysis of cycle ergometry-based cardiopulmonary exercise tests of 10 090 adult German volunteers from the Prevention First Registry.

    Science.gov (United States)

    Rapp, Daniel; Scharhag, Jürgen; Wagenpfeil, Stefan; Scholl, Johannes

    2018-03-05

    This study aims to construct quantile reference values for peak oxygen uptake (V̇O 2peak ) measured by cycle ergometry-based incremental cardiopulmonary exercise tests. Cross-sectional study using quantile regressions to fit sex-specific and age-specific quantile curves. Exercise tests were conducted using cycle ergometry. Maximal effort in the exercise tests wass assumed when respiratory exchange ratio  ≥1.1 or lactate ≥8 mmol/L or maximal heart rate ≥90% of the age-predicted maximal heart rate. This was assessed retrospectively for a random subsample with an a priori calculated sample size of n=252 participants. A network of private outpatient clinics in three German cities recorded the results of cycle ergometry-based cardiopulmonary exercise tests to a central database (Prevention First Registry) from 2001 to 2015. 10 090 participants (6462 men, 3628 women) from more than 100 local companies volunteered in workplace health promotion programmes. Participants were aged 21 to 83 years, were free of acute complaints and had primarily sedentary working environments. Peak oxygen uptake was measured as absolute V̇O 2peak in litres of oxygen per minute and relative V̇O 2peak in millilitres of oxygen per kilogram of body mass per minute. The mean age for both men and women was 46 years. Median relative V̇O 2peak was 36 and 30 mL/kg/min at 40 to 49 years, as well as 32 and 26 mL/kg/min at 50 to 59 years for men and women, respectively. An estimated proportion of 97% of the participants performed the exercise test until exertion. Reference values and nomograms for V̇O 2peak were derived from a large sample of preventive healthcare examinations of healthy white-collar workers. The presented results can be applied to participants of exercise tests using cycle ergometry who are part of a population that is comparable to this study. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved

  15. College Students' Volunteering: Factors Related to Current Volunteering, Volunteer Settings, and Motives for Volunteering

    Science.gov (United States)

    Moore, Erin W.; Warta, Samantha; Erichsen, Kristen

    2014-01-01

    Research has not explored the types of settings that college students prefer to volunteer for and how these settings might be influenced by personal factors (e.g., demographic, academic major, volunteering motivation, religiosity). Students from a Midwestern university (N = 406, 71.9% female) completed a survey that inquired about their…

  16. An Assessment of Health Status Among Medical Research Volunteers Who Served in the Project Whitecoat Program at Fort Detrick, Maryland

    Science.gov (United States)

    2005-03-01

    5.6 8 4.9 0,998 Glomerulonephritis 0 0.0 2 1.2 1.000 Goodpasiure’s syndrome 0 0.0 0 0.0 1.000 Guillain - Barre syndrome 2 1,2 1 0.3 1,000 Hay fever 55...were related to exposure to infectious diseases, for which volunteers would receive proven therapies and occasionally investigational pro- phylactic... physical examination, and laboratory studies) and then were assigned to a vartety of duties within the Medical Research Military Medicine. Vol. 170

  17. South African volunteers' experiences of volunteering at the 2010 ...

    African Journals Online (AJOL)

    The purpose of this research was to study the phenomenon of volunteering through South African volunteers' experiences of volunteering at the 2010 FIFA World Cup, specifically in the City of Tshwane (COT) in the Tshwane Metropolitan Area (TMA). A qualitative research design was employed, with specific reference to ...

  18. French registry of workers handling engineered nanomaterials as an instrument of integrated system for surveillance and research

    Science.gov (United States)

    Guseva Canu, I.; Boutou-Kempf, O.; Delabre, L.; Ducamp, S.; Iwatsubo, Y.; Marchand, J. L.; Imbernon, E.

    2013-04-01

    Despite the lack of data on the human health potential risks related to the engineered nanomaterials (ENM) exposure, ENM handling spreads in industry. The French government officially charged the InVS to develop an epidemiological surveillance of workers occupationally exposed to ENM. An initial surveillance plan was proposed on the basis of literature review and discussions with national and international ENM and occupational safety and health (OSH) experts. In site investigations and technical visits were then carried out to build an adequate surveillance system and to assess its feasibility. The current plan consists of a multi-step methodology where exposure registry construction is paramount. Workers potentially exposed to carbon nanotubes (CNT) or nanometric titanium dioxide (TiO2) will be identified using a 3-level approach: 1-identification and selection of companies concerned with ENM exposure (based on compulsory declaration and questionnaires), 2-in site exposure assessment and identification of the jobs/tasks with ENM exposure (based on job-expose matrix, further supplemented with measurements), and 3-identification of workers concerned. Data of interest will be collected by questionnaire. Companies and workers inclusion questionnaires are designed and currently under validation. This registration is at the moment planned for three years but could be extended and include other ENM. A prospective cohort study will be established from this registry, to pursue surveillance objectives and serve as an infrastructure for performing epidemiological and panel studies with specific research objectives.

  19. Impact of endoscopy-based research on quality of life in healthy volunteers

    Science.gov (United States)

    Link, Alexander; Treiber, Gerhard; Peters, Brigitte; Wex, Thomas; Malfertheiner, Peter

    2010-01-01

    AIM: To study the impact of an endoscopy-based long-term study on the quality of life in healthy volunteers (HV). METHODS: Ten HV were included into a long-term prospective endoscopy-based placebo-controlled trial with 15 endoscopic examinations per person in 5 different drug phases. Participants completed short form-36 (SF-36) and visual analog scale-based questionnaires (VAS) for different abdominal symptoms at days 0, 7 and 14 of each drug phase. Analyses were performed according to short- and long-term changes and compared to the control group. RESULTS: All HV completed the study with duration of more than 6 mo. Initial quality of life score was comparable to a general population. Analyses of the SF-36 questionnaires showed no significant changes in physical, mental and total scores, either in a short-term perspective due to different medications, or to potentially endoscopic procedure-associated long-term cumulative changes. Analogous to SF-36, VAS revealed no significant changes in total scores for pathological abdominal symptoms and remained unchanged over the time course and when compared to the control population. CONCLUSION: This study demonstrates that quality of life in HV is not significantly affected by a long-term endoscopy-based study with multiple endoscopic procedures. PMID:20101773

  20. Gigabit ethernet for volunteer computer

    OpenAIRE

    Starzec, Aleksandra; Field, Laurence; Segal, Ben

    2017-01-01

    Volunteer computing is a type of distributed computing in which computer owners can donate their spare computing resources (processing power, storage and Internet connection) to one or more research projects. Many existing volunteer computing platforms consist of millions of users, providing huge amount of memory and processing. Since the rapid growth in the volunteer computing projects, more researchers have been attracted to study and improve the existing volunteer computing system. Nowada...

  1. Using the Health Physics Student Volunteer Program for a Research Project Sponsored by the Medical Section of the Health Physics Society.

    Science.gov (United States)

    Steiner, Joseph; Leinwander, Penny

    2017-04-01

    The Health Physics Society (HPS) Medical Health Physics Section (MHPS) received a request to research data on radiation safety guidance related to the death of patients who have recently received therapeutic doses of sealed or unsealed therapy sources. The MHPS elected to use student volunteers to perform this research. The purpose of this manuscript is to describe and provide a template for the process used by the MHPS to develop a student volunteer program. To implement the student volunteer program, the MHPS collaborated with the HPS Student Support Committee to develop a research proposal and a student volunteer selection process. The research proposal was sent to HPS student members in a call for volunteers. Two student volunteers were chosen based on predetermined qualifications to complete the work effort outlined in the research proposal. This project progressed with the use of milestones and culminated with the students presenting their findings at the annual HPS meeting. The students received HPS student travel awards to present at the conference. This work effort proved to be extremely beneficial to all parties involved.

  2. Patients Receiving Integrative Medicine Effectiveness Registry (PRIMIER) of the BraveNet practice-based research network: study protocol.

    Science.gov (United States)

    Dusek, Jeffery A; Abrams, Donald I; Roberts, Rhonda; Griffin, Kristen H; Trebesch, Desiree; Dolor, Rowena J; Wolever, Ruth Q; McKee, M Diane; Kligler, Benjamin

    2016-02-04

    Integrative medicine (IM) provides patient-centered care and addresses the full range of physical, emotional, mental, social, spiritual, and environmental influences that affect a person's health. IM is a "whole systems" approach that employs multiple modalities as opposed to an isolated complementary therapy. Thus, studying outcomes of IM is more challenging than evaluating an isolated intervention. Practice-based research networks (PBRNs) allow for clinicians/investigators at multiple diverse sites using common methodology to pool their data, increase participant sample size and increase generalizability of results. To conduct real-world, practice-based research, the Bravewell Collaborative founded BraveNet in 2007 as the first national integrative medicine PBRN. Patients Receiving Integrative Medicine Effectiveness Registry (PRIMIER) is a prospective, non-randomized, observational evaluation conducted at fourteen clinical sites. Participants receive a non-standardized, personalized, multimodal IM approach for various medical conditions. Using the REDCap electronic platform, an anticipated 10,000 study participants will complete patient-reported outcome measures including Patient Reported Outcomes Measurement Information System (PROMIS)-29, Perceived Stress Scale-4, and the Patient Activation Measure at baseline, 2, 4, 6, 12, 18 and 24 months. Extractions from participants' electronic health records include IM services received, as well as ICD diagnostic codes, and CPT billing codes associated with each IM visit. Repeated-measures analyses will be performed on data to assess change from baseline through 24 months with planned subgroup analyses to include specific clinical population and specific IM intervention or combinations. As the PRIMIER registry grows, we anticipate that our results would provide an indication of the promise of PBRN research efforts in IM. Analyses will incorporate a large sample of participants and an expected 10-year observation period

  3. Volunteer Stories

    Science.gov (United States)

    ... She shares how her experience at the NIH led her to begin painting hospital windows in the ... study — healthy volunteer) I had never knowingly encountered anyone who was HIV positive until I was a ...

  4. Are Volunteer Satisfaction and Enjoyment Related to Cessation of Volunteering by Older Adults?

    Science.gov (United States)

    Okun, Morris; Infurna, Frank J; Hutchinson, Ianeta

    2016-05-01

    Previous research indicates that volunteer satisfaction and enjoyment do not exert direct effects on the cessation of volunteering by older adults. This study examined whether satisfaction with and enjoyment of volunteering indirectly affect volunteer cessation via hours volunteered. Our sample consisted of participants in the Americans' Changing Lives study (N = 380) who were 65 years old and older and who volunteered at Wave 1. Volunteer satisfaction, volunteer enjoyment, hours volunteered, and several covariates were assessed at Wave 1, and volunteer cessation was assessed 3 years later at Wave 2. Volunteer satisfaction and volunteer enjoyment were positively associated with hours volunteered, and more hours volunteered was associated with decreased likelihood of volunteer cessation. The indirect effects of volunteer satisfaction and volunteer enjoyment on volunteer cessation via hours volunteered were -.023 (p = .059) and -.036 (p = .015), respectively. The dynamics of volunteer cessation are important because a volunteer shortage is forecasted and because the benefits of volunteering may attenuate when volunteering stops. Future research should test the proposed causal sequence using longitudinal data with at least 3 waves. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  5. Giving voice to study volunteers: comparing views of mentally ill, physically ill, and healthy protocol participants on ethical aspects of clinical research.

    Science.gov (United States)

    Roberts, Laura Weiss; Kim, Jane Paik

    2014-09-01

    Ethical controversy surrounds clinical research involving seriously ill participants. While many stakeholders have opinions, the extent to which protocol volunteers themselves see human research as ethically acceptable has not been documented. To address this gap of knowledge, authors sought to assess views of healthy and ill clinical research volunteers regarding the ethical acceptability of human studies involving individuals who are ill or are potentially vulnerable. Surveys and semi-structured interviews were used to query clinical research protocol participants and a comparison group of healthy individuals. A total of 179 respondents participated in this study: 150 in protocols (60 mentally ill, 43 physically ill, and 47 healthy clinical research protocol participants) and 29 healthy individuals not enrolled in protocols. Main outcome measures included responses regarding ethical acceptability of clinical research when it presents significant burdens and risks, involves people with serious mental and physical illness, or enrolls people with other potential vulnerabilities in the research situation. Respondents expressed decreasing levels of acceptance of participation in research that posed burdens of increasing severity. Participation in protocols with possibly life-threatening consequences was perceived as least acceptable (mean = 1.82, sd = 1.29). Research on serious illnesses, including HIV, cancer, schizophrenia, depression, and post-traumatic stress disorder, was seen as ethically acceptable across respondent groups (range of means = [4.0, 4.7]). Mentally ill volunteers expressed levels of ethical acceptability for physical illness research and mental illness research as acceptable and similar, while physically ill volunteers expressed greater ethical acceptability for physical illness research than for mental illness research. Mentally ill, physically ill, and healthy participants expressed neutral to favorable perspectives regarding the ethical

  6. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months.

    Science.gov (United States)

    Beukelman, Timothy; Kimura, Yukiko; Ilowite, Norman T; Mieszkalski, Kelly; Natter, Marc D; Burrell, Grendel; Best, Brian; Jones, Jason; Schanberg, Laura E

    2017-04-17

    Herein we describe the history, design, and rationale of the new Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry and present the characteristics of patients with juvenile idiopathic arthritis (JIA) enrolled in the first 12 months of operation. The CARRA Registry began prospectively collecting data in the United States and Canada in July 2015 to evaluate the safety of therapeutic agents in persons with childhood-onset rheumatic disease, initially restricted to JIA. Secondary objectives include the evaluation of disease outcomes and their associations with medication use and other factors. Data are collected every 6 months and include clinical assessments, detailed medication use, patient-reported outcomes, and safety events. Follow-up is planned for at least 10 years for each participant and is facilitated by a telephone call center. As of July 2016, 1192 patients with JIA were enrolled in the CARRA Registry at 49 clinical sites. At enrollment, their median age was 12.4 years old and median disease duration was 2.6 years. Owing to preferential enrollment, patients with systemic JIA (13%) and with a polyarticular course (75%) were over-represented compared to patients in typical clinical practice. Approximately 49% were currently using biologic agents and ever use of oral glucocorticoids was common (47%). The CARRA Registry provides safety surveillance data to pharmaceutical companies to satisfy their regulatory requirements, and several independently-funded sub-studies that use the Registry infrastructure are underway. The new CARRA Registry successfully enrolled nearly 1200 participants with JIA in the first 12 months of its operation. Sustainable funding has been secured from multiple sources. The CARRA Registry may serve as a model for the study of other uncommon diseases.

  7. Detecting dissonance in clinical and research workflow for translational psychiatric registries.

    Science.gov (United States)

    Cofiel, Luciana; Bassi, Débora U; Ray, Ryan Kumar; Pietrobon, Ricardo; Brentani, Helena

    2013-01-01

    The interplay between the workflow for clinical tasks and research data collection is often overlooked, ultimately making it ineffective. To the best of our knowledge, no previous studies have developed standards that allow for the comparison of workflow models derived from clinical and research tasks toward the improvement of data collection processes. In this study we used the term dissonance for the occurrences where there was a discord between clinical and research workflows. We developed workflow models for a translational research study in psychiatry and the clinic where its data collection was carried out. After identifying points of dissonance between clinical and research models we derived a corresponding classification system that ultimately enabled us to re-engineer the data collection workflow. We considered (1) the number of patients approached for enrollment and (2) the number of patients enrolled in the study as indicators of efficiency in research workflow. We also recorded the number of dissonances before and after the workflow modification. We identified 22 episodes of dissonance across 6 dissonance categories: actor, communication, information, artifact, time, and space. We were able to eliminate 18 episodes of dissonance and increase the number of patients approached and enrolled in research study trough workflow modification. The classification developed in this study is useful for guiding the identification of dissonances and reveal modifications required to align the workflow of data collection and the clinical setting. The methodology described in this study can be used by researchers to standardize data collection process.

  8. The Human Volunteer in Military Biomedical Research (Military Medical Ethics. Volume 2, Chapter 19)

    Science.gov (United States)

    2002-10-01

    professionals as research- ers in a variety of sociocultural contexts, and the contribution that international human rights instruments can make in the...example, psychotropic or genital -tract medicaments. (See also Guideline 8 Commentary, Risks to groups of persons.) Exception to the requirement for

  9. United States Transuranium Registry summary report to June 30, 1974 to USAEC Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Norwood, W.D.; Newton, C.E. Jr.

    1974-06-01

    This report gives some of the highlights of the US Transuranium Registry since its inception in late 1968 together with more detailed information concerning the activities for the year ending April 30, 1974. Articles are referred to which describe autopsy studies to determine plutonium body content, performed since 1949 for the purpose of evaluating plant health safety programs. The purpose of the Registry is described and its administrative direction is discussed. The Registry is a data collecting agency whose success depends upon how well the data is collected by the cooperating companies is described

  10. The Danish Schizophrenia Registry

    Directory of Open Access Journals (Sweden)

    Baandrup L

    2016-10-01

    Full Text Available Lone Baandrup,1 Charlotte Cerqueira,2 Lea Haller,3 Lene Korshøj,3 Inge Voldsgaard,4 Merete Nordentoft5 1Centre for Neuropsychiatric Schizophrenia Research (CNSR and Centre for Clinical Intervention and Neuropsychiatric Schizophrenia Research (CINS, Mental Health Centre Glostrup, Copenhagen University Hospital, Glostrup, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Copenhagen, 3The Danish Clinical Registries, Registry Support Centre for Health Quality and Informatics (KCKS-West, Aarhus, 4Psychosis Ward, Section P, Aarhus University Hospital, Risskov, 5Mental Health Centre Copenhagen, Mental Health Services in the Capital Region of Denmark, University of Copenhagen, Copenhagen, DenmarkAim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research.Study population: Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients.Main variables: The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning.Descriptive data: The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may

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

    Energy Technology Data Exchange (ETDEWEB)

    Kathren, R.L.; Harwick, L.A.; Toohey, R.E.; Russell, J.J.; Filipy, R.E.; Dietert, S.E.; Hunacek, M.M.; Hall, C.A.

    1994-10-01

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

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

    International Nuclear Information System (INIS)

    Kathren, R.L.; Harwick, L.A.; Toohey, R.E.; Russell, J.J.; Filipy, R.E.; Dietert, S.E.; Hunacek, M.M.; Hall, C.A.

    1994-01-01

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

  13. Chinese SLE Treatment and Research group (CSTAR) registry: V. gender impact on Chinese patients with systemic lupus erythematosus.

    Science.gov (United States)

    Zhang, S; Su, J; Li, X; Zhang, X; Liu, S; Wu, L; Ma, L; Bi, L; Zuo, X; Sun, L; Huang, C; Zhao, J; Li, M; Zeng, X

    2015-10-01

    Many studies have shown that differences were observed between male and female lupus patients. Although systemic lupus erythematosus (SLE) affects mostly females (female:male ratio 9:1), male SLE patients show higher mortality due to kidney and neurological disease. Currently there are limited epidemiological data concerning lupus in the Chinese population. As such, the Chinese SLE Treatment and Research group (CSTAR) developed the first online registry of Chinese lupus patients in 2009, and represents a multicenter observational study that attempts to describe and compile the major clinical characteristics of lupus in Chinese patients. To investigate the effect of gender on the phenotypes of Chinese SLE patients. Data for 2104 SLE patients were prospectively collected and included in the CSTAR registry. Patients fulfilled the 1997 American College of Rheumatology (ACR) SLE classification criteria. We conducted a cross-sectional case-control study to analyze patient clinical and laboratory data at onset and at enrollment. SLE disease activity scores (SLEDAI) were also measured at enrollment. This study included 1914 women and 190 men. Males and females showed no differences in mean ages at onset, delay of diagnosis and disease duration. Males presented more frequently with fever (p = 0.003), while musculoskeletal involvement (p = 0.001) and cytopenia (p = 0.017) was more common in females as the initial manifestation at onset of SLE. For manifestations at enrollment, males presented more frequently with fever (p = 0.005), renal disease (p = 0.019), vasculitis (p = 0.032) and neuropsychiatric lupus (p = 0.007). For cumulative manifestations at enrollment, males presented more frequently with discoid rash (p lupus (p = 0.036), while less frequently with arthritis (p = 0.011). However, the laboratory data showed no significant differences between the two groups at enrollment. Males also had higher SLEDAI scores at enrollment (p

  14. The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.

    Science.gov (United States)

    Baugh, Joshua; Bartels, Ute; Leach, James; Jones, Blaise; Chaney, Brooklyn; Warren, Katherine E; Kirkendall, Jenavieve; Doughman, Renee; Hawkins, Cynthia; Miles, Lili; Fuller, Christine; Hassall, Tim; Bouffet, Eric; Lane, Adam; Hargrave, Darren; Grill, Jacques; Hoffman, Lindsey M; Jones, Chris; Towbin, Alex; Savage, Sharon A; Monje, Michelle; Li, Xiao-Nan; Ziegler, David S; Veldhuijzen van Zanten, Sophie; Kramm, Christof M; van Vuurden, Dannis G; Fouladi, Maryam

    2017-04-01

    Diffuse intrinsic pontine glioma (DIPG), a rare, often fatal childhood brain tumor, remains a major therapeutic challenge. In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry (IDIPGR) to advance understanding of DIPG. Comprised of comprehensive deidentified but linked clinical, imaging, histopathological, and genomic repositories, the IDIPGR uses standardized case report forms for uniform data collection; serial imaging and histopathology are centrally reviewed by IDIPGR neuro-radiologists and neuro-pathologists, respectively. Tissue and genomic data, and cell cultures derived from autopsies coordinated by the IDIPGR are available to investigators for studies approved by the Scientific Advisory Committee. From April 2012 to December 2016, 670 patients diagnosed with DIPG have been enrolled from 55 participating institutions in the US, Canada, Australia and New Zealand. The radiology repository contains 3558 studies from 448 patients. The pathology repository contains tissue on 81 patients with another 98 samples available for submission. Fresh DIPG tissue from seven autopsies has been sent to investigators to develop primary cell cultures. The bioinformatics repository contains next-generation sequencing data on 66 tumors. Nine projects using data/tissue from the IDIPGR by 13 principle investigators from around the world are now underway. The IDIPGR, a successful alliance among philanthropic agencies and investigators, has developed and maintained a highly collaborative, hypothesis-driven research infrastructure for interdisciplinary and translational projects in DIPG to improve diagnosis, response assessment, treatment and outcome for patients.

  15. Challenges of implementation and implementation research: Learning from an intervention study designed to improve tumor registry reporting.

    Science.gov (United States)

    McAlearney, Ann Scheck; Walker, Daniel M; Livaudais-Toman, Jennifer; Parides, Michael; Bickell, Nina A

    2016-01-01

    Implementation of interventions designed to improve the quality of medical care often proceeds differently from what is planned. Improving existing conceptual models to better understand the sources of these differences can help future projects avoid these pitfalls and achieve desired effectiveness. To inform an adaptation of an existing theoretical model, we examined unanticipated changes that occurred in an intervention designed to improve reporting of adjuvant therapies for breast cancer patients at a large, urban academic medical center. Guided by the complex innovation implementation conceptual framework, our study team observed and evaluated the implementation of an intervention designed to improve reporting to a tumor registry. Findings were assessed against the conceptual framework to identify boundary conditions and modifications that could improve implementation effectiveness. The intervention successfully increased identification of the managing medical oncologist and treatment reporting. During implementation, however, unexpected external challenges including hospital acquisitions of community practices and practices' responses to government incentives to purchase electronic medical record systems led to unanticipated changes and associated threats to implementation. We present a revised conceptual model that incorporates the sources of these unanticipated challenges. This report of our experience highlights the importance of monitoring implementation over time and accounting for changes that affect both implementation and measurement of intervention impact. In this article, we use our study to examine the challenges of implementation research in health care, and our experience can help future implementation efforts.

  16. Challenges of implementation and implementation research: Learning from an intervention study designed to improve tumor registry reporting

    Directory of Open Access Journals (Sweden)

    Ann Scheck McAlearney

    2016-08-01

    Full Text Available Objectives: Implementation of interventions designed to improve the quality of medical care often proceeds differently from what is planned. Improving existing conceptual models to better understand the sources of these differences can help future projects avoid these pitfalls and achieve desired effectiveness. To inform an adaptation of an existing theoretical model, we examined unanticipated changes that occurred in an intervention designed to improve reporting of adjuvant therapies for breast cancer patients at a large, urban academic medical center. Methods: Guided by the complex innovation implementation conceptual framework, our study team observed and evaluated the implementation of an intervention designed to improve reporting to a tumor registry. Findings were assessed against the conceptual framework to identify boundary conditions and modifications that could improve implementation effectiveness. Results: The intervention successfully increased identification of the managing medical oncologist and treatment reporting. During implementation, however, unexpected external challenges including hospital acquisitions of community practices and practices’ responses to government incentives to purchase electronic medical record systems led to unanticipated changes and associated threats to implementation. We present a revised conceptual model that incorporates the sources of these unanticipated challenges. Conclusion: This report of our experience highlights the importance of monitoring implementation over time and accounting for changes that affect both implementation and measurement of intervention impact. In this article, we use our study to examine the challenges of implementation research in health care, and our experience can help future implementation efforts.

  17. 76 FR 20690 - International Consortium of Orthopedic Registries; Public Workshop

    Science.gov (United States)

    2011-04-13

    ... HUMAN SERVICES Food and Drug Administration International Consortium of Orthopedic Registries; Public... Administration (FDA) is announcing a public workshop entitled ``International Consortium of Orthopedic Registries... orthopedic registries that have orthopedic implant information and create a research network to advance the...

  18. Conflict of interest disclosure in biomedical research: A review of current practices, biases, and the role of public registries in improving transparency.

    Science.gov (United States)

    Dunn, Adam G; Coiera, Enrico; Mandl, Kenneth D; Bourgeois, Florence T

    Conflicts of interest held by researchers remain a focus of attention in clinical research. Biases related to these relationships have the potential to directly impact the quality of healthcare by influencing decision-making, yet conflicts of interest remain under-reported, inconsistently described, and difficult to access. Initiatives aimed at improving the disclosure of researcher conflicts of interest are still in their infancy but represent a vital reform that must be addressed before potential biases associated with conflicts of interest can be mitigated, and trust in the impartiality of clinical evidence restored. In this review, we examine the prevalence of conflicts of interest, evidence of the effects that disclosed and undisclosed conflicts of interest have had on the reporting of clinical evidence, and the emerging approaches for improving the completeness and consistency of disclosures. Through this review of emerging technologies, we recognize a growing interest in publicly-accessible registries for researcher conflicts of interest, and propose five desiderata aimed at maximizing the value of such registries: mandates for ensuring that researchers keep their records up to date; transparent records that are made available to the public; interoperability to allow researchers, bibliographic databases, and institutions to interact with the registry; a consistent taxonomy for describing different classes of conflicts of interest, and the ability to automatically generate conflicts of interest statements for use in published articles.

  19. The Danish Heart Registry

    DEFF Research Database (Denmark)

    Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted

    2016-01-01

    AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...

  20. Explaining Research Utilization Among 4-H Faculty, Staff, and Volunteers: The Role of Self-Efficacy, Learning Goal Orientation, Training, and Previous Experience

    Directory of Open Access Journals (Sweden)

    Julianne Tillman

    2014-06-01

    Full Text Available An investigation of factors that facilitate the utilization of research evidence among faculty, staff, and volunteers in the 4-H Youth Development Program is presented in this paper. Participants (N= 368; 86 4-H faculty, 153 staff, and 129 volunteers represented 35 states; structural equation modeling was utilized in the analyses. Results of the path analysis explained 56% of variance in research utilization and 28% in research utilization self-efficacy. Among the factors impacting research utilization, self-efficacy played the most important role. In turn, self-efficacy for research utilization was positively influenced by participants’ learning goal orientation, frequency of 4-H training during the last 12 months, education in research-related areas, and investigative career interests. In addition, 4-H staff who were exposed to research at higher levels reported higher research utilization self-efficacy. The findings reinforce the importance of fostering research utilization self-efficacy among 4-H faculty, staff, and volunteers. Among the suggestions presented are regular 4-H training opportunities and on-going exposure to program evaluation and program improvement experiences.

  1. The evaluation of complex clinical trial protocols: resources available to research ethics committees and the use of clinical trial registries--a case study.

    Science.gov (United States)

    Homedes, Núria; Ugalde, Antonio

    2015-06-01

    To assess the potential role of clinical trial (CT) registries and other resources available to research ethics committees (RECs) in the evaluation of complex CT protocols in low-income and middle-income countries. Using a case study approach, the authors examined the decision-making process of a REC in Argentina and its efforts to use available resources to decide on a complex protocol. We also analysed the information in the USA and other CT registries and consulted 24 CT experts in seven countries. Information requested by the Argentinean REC from other national RECs and ethics' experts was not useful to verify the adequacy of the REC's decision whether or not to approve the CT. The responses from the national regulatory agency and the sponsor were not helpful either. The identification of international resources that could assist was beyond the REC's capability. The information in the USA and other CT registries is limited, and at times misleading; and its accuracy is not verified by register keepers. RECs have limited access to experts and institutions that could assist them in their deliberations. Sponsors do not always answer RECs' request for information to properly conduct the ethical and methodological assessment of CT protocols. The usefulness of the CT registries is curtailed by the lack of appropriate codes and by data errors. Information about reasons for rejection, withdrawal or suspension of the trial should be included in the registries. Establishing formal channels of communication among national and foreign RECs and with independent international reference centres could strengthen the ethical review of CT protocols. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  2. United States Transuranium Registry annual report October 1, 1975-October 1, 1976 to ERDA Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Norwood, W.D.; Newton, C.E. Jr.

    1976-12-01

    The US Transuranium Registry is a center for collecting precise information about the occupational effects of transuranic elements on man. To date 13,943 past and present transuranium workers have been tabulated. Health, mortality, causes of death and transuranic organ depositions are being studied. Bryce D. Breitenstein, Jr., M.D. was named Director of the Registry in July 1976. The Los Alamos Scientific Laboratory is directing the epidemiological portion of a plutonium worker health study with George Voelz, M.D. and Louis Hempelmann, M.D. serving as principal investigators. The USTR is affiliated with this study. USTR statistical data shows progressive acquisition of information for 1975 and 1976. ERDA contractor and NRC licensee activities at participating sited are discussed. Preparation of the input format to record and store USTR data has been completed and is ready for trial operation. USTR educational and informational activities were extensive and varied. Many queries arose from the use of published Registry autopsy data by Ralph Nader's associate Dr. S. Wolfe. There was continued cooperation with representatives of the British Atomic Energy Authority in their efforts to develop a plutonium registry

  3. Population-based cancer registries for quality-of-life research : A work-in-progress resource for survivorship studies?

    NARCIS (Netherlands)

    Thong, M.S.Y.; Mols, F.; Stein, K.D.; Smith, T.; Coebergh, J.W.W.; van de Poll-Franse, L.V.

    2013-01-01

    Background With the increasing number and diversity of cancer survivors, studies of survivors' physical, emotional, and social health and well being are of growing importance. Population-based cancer registries, which collect data on incident cases, can play an important role in quality-of-life

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

    Science.gov (United States)

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

    2016-01-19

    information. More mature country capacity reflected by published health registry based research is emerging in settings reaching regional or national scale, increasingly with electronic solutions. 66 scientific publications were identified based on 32 registry systems in 23 countries over a period of 10 years; this reflects a challenging experience and capacity gap for delivering sustainable high quality registries. Registries are being developed and used in many high burden countries, but their potential benefits are far from realized as few countries have fully transitioned from paper-based health information to integrated electronic backbone systems. Free tools and frameworks exist to facilitate progress in health information for women and children.

  5. Data Quality in Rare Diseases Registries.

    Science.gov (United States)

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

    2017-01-01

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

  6. Clinical Case Registries (CCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

  7. Stroke Trials Registry

    Science.gov (United States)

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

  8. Shifting management of a community volunteer system for improved child health outcomes: results from an operations research study in Burundi.

    Science.gov (United States)

    Weiss, Jennifer; Makonnen, Raphael; Sula, Delphin

    2015-01-01

    Community-based strategies that foster frequent contact between caregivers of children under five and provide credible sources of health information are essential to improve child survival. Care Groups are a community-based implementation strategy for the delivery of social and behavior change interventions. This study assessed if supervision of Care Group activities by Ministry of Health (MOH) personnel could achieve the same child health outcomes as supervision provided by specialized non-governmental organization (NGO) staff. The study was a pretest-posttest quasi-experimental design implemented in Burundi. A total of 45 MOH-led Care Groups with 478 Care Group Volunteers (CGVs) were established in the intervention area; and 50 NGO-led Care Groups with 509 CGVs were formed in the comparison area. Data were collected from 593 and 700 mothers of children 0-23 months at baseline and endline, respectively. Pearson's chi-squared test and difference-in-difference analysis assessed changes in 40 child health and nutrition outcomes. A qualitative process evaluation was also conducted midway through the study. The MOH-led Care Group model performed at least as well as the NGO-led model in achieving specific child health and nutrition outcomes. Mothers of children 0-23 months in the intervention and comparison sites reported similar levels of knowledge and practices for 38 of 40 dependent variables measured in the study, and these results remained unchanged after accounting for differences in the indicator values at baseline. Process monitoring data confirmed that the MOH-led Care Group model and the NGO-led Care Group model were implemented with similar intervention strength. The study demonstrated that behavior change interventions traditionally led by NGOs can be implemented through the existing MOH systems and achieve similar results, thereby increasing the potential for sustainable child health outcomes. Future research on the MOH-led Care Group model is required to

  9. Establishment of the Pediatric Obesity Weight Evaluation Registry: A National Research Collaborative for Identifying the Optimal Assessment and Treatment of Pediatric Obesity.

    Science.gov (United States)

    Kirk, Shelley; Armstrong, Sarah; King, Eileen; Trapp, Christine; Grow, Mollie; Tucker, Jared; Joseph, Madeline; Liu, Lenna; Weedn, Ashley; Sweeney, Brooke; Fox, Claudia; Fathima, Samreen; Williams, Ronald; Kim, Roy; Stratbucker, William

    2017-02-01

    Prospective patient registries have been successfully utilized in several disease states with a goal of improving treatment approaches through multi-institutional collaboration. The prevalence of youth with severe obesity is at a historic high in the United States, yet evidence to guide effective weight management is limited. The Pediatric Obesity Weight Evaluation Registry (POWER) was established in 2013 to identify and promote effective intervention strategies for pediatric obesity. Sites in POWER provide multicomponent pediatric weight management (PWM) care for youth with obesity and collect a defined set of demographic and clinical parameters, which they regularly submit to the POWER Data Coordinating Center. A program profile survey was completed by sites to describe characteristics of the respective PWM programs. From January 2014 through December 2015, 26 US sites were enrolled in POWER and had submitted data on 3643 youth with obesity. Ninety-five percent were 6-18 years of age, 54% female, 32% nonwhite, 32% Hispanic, and 59% publicly insured. Over two-thirds had severe obesity. All sites included a medical provider and used weight status in their referral criteria. Other program characteristics varied widely between sites. POWER is an established national registry representing a diverse sample of youth with obesity participating in multicomponent PWM programs across the United States. Using high-quality data collection and a collaborative research infrastructure, POWER aims to contribute to the development of evidence-based guidelines for multicomponent PWM programs.

  10. The Cardiomyopathy Registry of the EURObservational Research Programme of the European Society of Cardiology: baseline data and contemporary management of adult patients with cardiomyopathies.

    Science.gov (United States)

    Charron, Philippe; Elliott, Perry M; Gimeno, Juan R; Caforio, Alida L P; Kaski, Juan Pablo; Tavazzi, Luigi; Tendera, Michal; Maupain, Carole; Laroche, Cécile; Rubis, Pawel; Jurcut, Ruxandra; Calò, Leonardo; Heliö, Tiina M; Sinagra, Gianfranco; Zdravkovic, Marija; Kavoliuniene, Aušra; Felix, Stephan B; Grzybowski, Jacek; Losi, Maria-Angela; Asselbergs, Folkert W; García-Pinilla, José Manuel; Salazar-Mendiguchia, Joel; Mizia-Stec, Katarzyna; Maggioni, Aldo P

    2018-01-24

    The Cardiomyopathy Registry of the EURObservational Research Programme is a prospective, observational, and multinational registry of consecutive patients with four cardiomyopathy subtypes: hypertrophic cardiomyopathy (HCM), dilated cardiomyopathy (DCM), arrhythmogenic right ventricular cardiomyopathy (ARVC), and restrictive cardiomyopathy (RCM). We report the baseline characteristics and management of adults enrolled in the registry. A total of 3208 patients were enrolled by 69 centres in 18 countries [HCM (n = 1739); DCM (n = 1260); ARVC (n = 143); and RCM (n = 66)]. Differences between cardiomyopathy subtypes (P < 0.001) were observed for age at diagnosis, history of familial disease, history of sustained ventricular arrhythmia, use of magnetic resonance imaging or genetic testing, and implantation of defibrillators. When compared with probands, relatives had a lower age at diagnosis (P < 0.001), but a similar rate of symptoms and defibrillators. When compared with the Long-Term phase, patients of the Pilot phase (enrolled in more expert centres) had a more frequent rate of familial disease (P < 0.001), were more frequently diagnosed with a rare underlying disease (P < 0.001), and more frequently implanted with a defibrillator (P = 0.023). Comparing four geographical areas, patients from Southern Europe had a familial disease more frequently (P < 0.001), were more frequently diagnosed in the context of a family screening (P < 0.001), and more frequently diagnosed with a rare underlying disease (P < 0.001). By providing contemporary observational data on characteristics and management of patients with cardiomyopathies, the registry provides a platform for the evaluation of guideline implementation. Potential gaps with existing recommendations are discussed as well as some suggestions for improvement of health care provision in Europe. Published on behalf of the European Society of Cardiology. All rights reserved.

  11. Pharmacotherapy for Non-Cystic Fibrosis Bronchiectasis: Results From an NTM Info & Research Patient Survey and the Bronchiectasis and NTM Research Registry.

    Science.gov (United States)

    Henkle, Emily; Aksamit, Timothy R; Barker, Alan F; Curtis, Jeffrey R; Daley, Charles L; Anne Daniels, M Leigh; DiMango, Angela; Eden, Edward; Fennelly, Kevin; Griffith, David E; Johnson, Margaret; Knowles, Michael R; Leitman, Amy; Leitman, Philip; Malanga, Elisha; Metersky, Mark L; Noone, Peadar G; O'Donnell, Anne E; Olivier, Kenneth N; Prieto, Delia; Salathe, Matthias; Thomashow, Byron; Tino, Gregory; Turino, Gerard; Wisclenny, Susan; Winthrop, Kevin L

    2017-12-01

    Non-cystic fibrosis bronchiectasis ("bronchiectasis") is a chronic inflammatory lung disease often associated with nontuberculous mycobacteria (NTM) infection. Very little data exist to guide bronchiectasis management decisions. We sought to describe patterns of inhaled corticosteroid (ICS) and antibiotic therapy in the United States. We invited 2,000 patients through NTM Info & Research (NTMir) to complete an anonymous electronic survey. We separately queried baseline clinical and laboratory data from the US Bronchiectasis and NTM Research Registry (BRR). Among 511 NTMir survey responders with bronchiectasis, whose median age was 67 years, 85 (17%) reported asthma and 99 (19%) reported COPD. History of ICS use was reported by 282 (55%), 171 (61%) of whom were treated 1 year or longer, and 150 (53%) were currently taking ICSs. Fewer reported ever taking azithromycin for non-NTM bronchiectasis (203 responders [40%]) or inhaled tobramycin (78 responders [15%]). The median age of 1,912 BRR patients was 69 years; 528 (28%) had asthma and 360 (19%) had COPD. Among 740 patients (42%) without NTM, 314 were taking ICSs at baseline. Among patients without NTM who were taking ICSs, only 178 (57%) had a concurrent diagnosis of COPD or asthma that could explain ICS use. Fewer were taking suppressive macrolides (96 patients [13%]), and of the 70 patients (10%) taking inhaled suppressive antibiotics, 48 (68%) had chronic Pseudomonas aeruginosa infection. ICS use was common in two national samples of patients with bronchiectasis, with relatively few patients taking suppressive antibiotic therapies. Further research is needed to clarify the safety and effectiveness of these therapies in patients with bronchiectasis. Copyright © 2017 American College of Chest Physicians. All rights reserved.

  12. Converged Registries Solution (CRS)

    Data.gov (United States)

    Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...

  13. The effect of volunteer management professionalization level on volunteer work satisfaction

    OpenAIRE

    Peychlová, Štěpánka

    2013-01-01

    This text concentrates on volunteering in volunteer organizations. It examines the connection between volunteer management professionalization level and volunteer work satisfaction in these organizations. In the theoretical part is defined the concepts of volunteering, professionalization and satisfaction are defined and their particular aspects associated with the focus of the thesis are highlighted. The empirical part describes the construction of the research method and presents the analys...

  14. United States Transuranium and Uranium Registries: A human tissue research program. USTUR annual report for October 1, 1997 through January 31, 1999

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed.)

    1999-10-01

    The United States Transuranium and Uranium Registries (USTUR) are a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This annual report covers October 1, 1997, through January 31, 1999; the reporting period has been extended so that future annual reports will coincide with the period covered by the grant itself.

  15. Why Volunteer? Understanding Motivations for Student Volunteering

    Science.gov (United States)

    Holdsworth, Clare

    2010-01-01

    The profile of volunteering in English Higher Education (HE) has been enhanced in recent years through various initiatives that have not only funded activities, but have sought to expand the range of volunteering opportunities available to students and recognise the contribution that volunteering can make to students' employability. This expansion…

  16. Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.

    Science.gov (United States)

    Veldhuijzen van Zanten, Sophie E M; Baugh, Joshua; Chaney, Brooklyn; De Jongh, Dennis; Sanchez Aliaga, Esther; Barkhof, Frederik; Noltes, Johan; De Wolf, Ruben; Van Dijk, Jet; Cannarozzo, Antonio; Damen-Korbijn, Carin M; Lieverst, Jan A; Colditz, Niclas; Hoffmann, Marion; Warmuth-Metz, Monika; Bison, Brigitte; Jones, David T W; Sturm, Dominik; Gielen, Gerrit H; Jones, Chris; Hulleman, Esther; Calmon, Raphael; Castel, David; Varlet, Pascale; Giraud, Géraldine; Slavc, Irene; Van Gool, Stefaan; Jacobs, Sandra; Jadrijevic-Cvrlje, Filip; Sumerauer, David; Nysom, Karsten; Pentikainen, Virve; Kivivuori, Sanna-Maria; Leblond, Pierre; Entz-Werle, Natasha; von Bueren, Andre O; Kattamis, Antonis; Hargrave, Darren R; Hauser, Péter; Garami, Miklos; Thorarinsdottir, Halldora K; Pears, Jane; Gandola, Lorenza; Rutkauskiene, Giedre; Janssens, Geert O; Torsvik, Ingrid K; Perek-Polnik, Marta; Gil-da-Costa, Maria J; Zheludkova, Olga; Shats, Liudmila; Deak, Ladislav; Kitanovski, Lidija; Cruz, Ofelia; Morales La Madrid, Andres; Holm, Stefan; Gerber, Nicolas; Kebudi, Rejin; Grundy, Richard; Lopez-Aguilar, Enrique; Zapata-Tarres, Marta; Emmerik, John; Hayden, Tim; Bailey, Simon; Biassoni, Veronica; Massimino, Maura; Grill, Jacques; Vandertop, William P; Kaspers, Gertjan J L; Fouladi, Maryam; Kramm, Christof M; van Vuurden, Dannis G

    2017-04-01

    Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research, to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network. By bringing together biomedical professionals and parents as patient representatives, several collaborative DIPG-related projects have been realized. With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence Interval (CI) 5.6-6.4 months) and the median overall survival is 11.0 months (95% CI 10.5-11.5 months). At two and five years post-diagnosis, 10 and 2% of patients are alive, respectively. The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.

  17. Perceptions of Equipoise, Risk-Benefit Ratios, and "Otherwise Healthy Volunteers" in the Context of Early-Phase HIV Cure Research in the United States: A Qualitative Inquiry.

    Science.gov (United States)

    Dubé, Karine; Dee, Lynda; Evans, David; Sylla, Laurie; Taylor, Jeff; Brown, Brandon; Miller, Veronica; Corneli, Amy; Skinner, Asheley; Greene, Sandra B; Tucker, Joseph D; Rennie, Stuart

    2018-02-01

    Early-phase HIV cure research is conducted against a background of highly effective antiretroviral therapy, and involves risky interventions in individuals who enjoy an almost normal life expectancy. To explore perceptions of three ethical topics in the context of HIV cure research-(a) equipoise, (b) risk-benefit ratios, and (c) "otherwise healthy volunteers"-we conducted 36 in-depth interviews (IDIs) with three groups of purposively selected key informants: clinician-researchers ( n = 11), policy-makers and bioethicists ( n = 13), and people living with HIV (PLWHIV; n = 12). Our analysis revealed variability in perceptions of equipoise. Second, most key informants believed there was no clear measure of risk-benefit ratios in HIV cure research, due in part to the complexity of weighing (sometimes unknown) risks to participants and (sometimes speculative) benefits to science and society. Third, most clinician-researchers and policy-makers/bioethicists viewed potential HIV cure study participants as "otherwise healthy volunteers," but this perception was not shared among PLWHIV in our study.

  18. The Danish Schizophrenia Registry

    DEFF Research Database (Denmark)

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea

    2016-01-01

    Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...

  19. Volunteer recruitment: the role of organizational support and anticipated respect in non-volunteers' attraction to charitable volunteer organizations.

    Science.gov (United States)

    Boezeman, Edwin J; Ellemers, Naomi

    2008-09-01

    In 3 experiments the authors examined how specific characteristics of charitable volunteer organizations contribute to the recruitment of new volunteers. In line with predictions, Study 1 revealed that providing non-volunteers with information about organizational support induced anticipated feelings of respect, which subsequently enhanced their attraction to the volunteer organization. However, information about the current success of the volunteer organization did not affect anticipated pride (as among those who seek paid employment) and in fact caused potential volunteers to perceive the organization as being in less need for additional volunteers. Study 2 further showed that information about support from the volunteer organization is a more relevant source of anticipated respect and organizational attraction than support from co-volunteers. Study 3 finally showed that information about task and emotional support for volunteers contributes to anticipated respect and organizational attractiveness and that this increases the actual willingness of non-volunteers to participate in the volunteer organization. Interventions aimed at attracting volunteers and avenues for further research are discussed.

  20. United States Transuranium Registry annual report October 1, 1977-October 1, 1978 to DOE Office of Health and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Norwood, W.D.; Newton, C.E. Jr.

    1979-01-01

    The US Transuranium Registry (USTR) serves as a center for the acquisition and recording of information of the transuranic elements in man and their effects on man. To data 15,045 US transuranium workers have been tabulated, authority for 1048 autopsies obtained, and 93 autopsies granted. Department of Energy contractor and National Regulatory Commission licensee activities at participating sites are discussed. A significant increase in participation from the Savannah River plant has been received during the past year. The low level transuranic measurement laboratory analyzing tissue specimens for the USTR (except Rocky Flats specimens) was transferred from Battelle Pacific Northwest Laboratory to Los Alamos Scientific Laboratory. Dr. Charles W. Mays was appointed Chairman of the USTR Advisory Committee upon the resignation of Dr. James H. Sterner. To improve the quality of autopsy tissue for analysis prosectors were appointed at the Hanford, Rocky Flats, and Los Alamos sites. USTR educational and informational activities were extensive and varied

  1. Chinese SLE Treatment and Research group (CSTAR) registry: II. Prevalence and risk factors of pulmonary arterial hypertension in Chinese patients with systemic lupus erythematosus.

    Science.gov (United States)

    Li, M; Wang, Q; Zhao, J; Li, Z; Ye, Z; Li, C; Li, X; Zhu, P; Wang, Z; Zheng, Y; Li, X; Zhang, M; Tian, Z; Liu, Y; He, J; Zhang, F; Zhao, Y; Zeng, X

    2014-09-01

    To estimate the prevalence of pulmonary arterial hypertension (PAH) and risk factors for PAH in patients registered in the Chinese SLE Treatment and Research group (CSTAR) database, the first online registry of Chinese patients with systemic lupus erythematosus (SLE). A prospective cross-sectional study of patients with SLE was conducted using the CSTAR registry. Resting transthoracic echocardiography was used to estimate pulmonary artery pressure (PAP); PAH was defined as systolic PAP (PASP)≥40 mmHg. Patients with interstitial lung disease, valvular disease or cardiomyopathy were excluded because of disease influence on PAP. We explored potential risk factors for PAH including patient characteristics, organ involvement, laboratory findings and SLE disease activity. Of 1934 patients with SLE, 74 had PASP with 54.2±17.1 (40,106) mmHg and were diagnosed with probable PAH. The incidences of lupus nephritis, pleuritis, pericarditis, hypocomplementemia, anti-SSA, and anti-ribonucleoprotein (RNP) were significantly higher in patients with PAH than in those without (p<0.05). SLE disease activity was significantly higher in patients with PAH than in unaffected patients (p<0.05). Multivariate analysis indicated that pericarditis (odds ratio (OR)=4.248), pleuritis (OR=3.061) and anti-RNP (OR=2.559) were independent risk factors for PAH in patients with SLE (p<0.05). The possible prevalence of PAH was 3.8% in Chinese patients with SLE in the CSTAR registry. The significant association of pericarditis, pleuritis and anti-RNP positivity with PAH suggests that higher disease activity and vasculopathy may both contribute to the development of PAH in SLE, which need be treated aggressively to improve prognosis. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  2. When Volunteers Attack!

    Science.gov (United States)

    Bennett, Gayle

    2009-01-01

    Working with alumni volunteers shouldn't create horror and suspense. Following a few key steps can help maintain a smooth relationship between alumni volunteers and the alumni relations office staff. In this article, the author discusses how to manage volunteers and keep the alumni volunteer relationship on track.

  3. Challenges and opportunities for HSCT outcome registries: perspective from international HSCT registries experts.

    Science.gov (United States)

    Aljurf, M; Rizzo, J D; Mohty, M; Hussain, F; Madrigal, A; Pasquini, M C; Passweg, J; Chaudhri, N; Ghavamzadeh, A; Solh, H E; Atsuta, Y; Szer, J; Kodera, Y; Niederweiser, D; Gratwohl, A; Horowitz, M M

    2014-08-01

    Patient registries, frequently referred to as outcome registries, are 'organized systems' that use observational study methods to collect uniform data. Registries are used to evaluate specified outcomes for a population defined by a particular disease, condition or exposure that serves one or more predetermined scientific, clinical or policy purposes. Outcome registries were established very early in the development of hematopoietic SCT (HSCT). Currently, myriads of national and international HSCT registries collect information about HSCT activities and outcomes. These registries have contributed significantly to determining trends, patterns, treatment practices and outcomes. There are many different HSCT registries, each with different aims and goals; some are led by professional organizations, others by government authorities, health care providers or third parties. Some registries simply assess activity and others study outcomes. These registries are complementary and are gradually developing interoperability with each other to expand future collaborative research activities. A key development in the last few years was the incorporation of recommendations into the World Health Organization guiding principles on cell, tissue and organ transplantation. The data collection and analysis should be an integral part of therapy and an obligation rather than a choice for transplant programs. This article examines challenges in ensuring data quality and functions of outcome registries, using HSCT registries as an example. It applies to all HSCT-related data, but is predominantly focused on HSCT registries of professional organizations.

  4. EsPRit: ethics committee proposals for Long Term Medical Data Registries in rapidly evolving research fields - a future-proof best practice approach.

    Science.gov (United States)

    Oberbichler, S; Hackl, W O; Hörbst, A

    2017-10-18

    Long-term data collection is a challenging task in the domain of medical research. Many effects in medicine require long periods of time to become traceable e.g. the development of secondary malignancies based on a given radiotherapeutic treatment of the primary disease. Nevertheless, long-term studies often suffer from an initial lack of available information, thus disallowing a standardized approach for their approval by the ethics committee. This is due to several factors, such as the lack of existing case report forms or an explorative research approach in which data elements may change over time. In connection with current medical research and the ongoing digitalization in medicine, Long Term Medical Data Registries (MDR-LT) have become an important means of collecting and analyzing study data. As with any clinical study, ethical aspects must be taken into account when setting up such registries. This work addresses the problem of creating a valid, high-quality ethics committee proposal for medical registries by suggesting groups of tasks (building blocks), information sources and appropriate methods for collecting and analyzing the information, as well as a process model to compile an ethics committee proposal (EsPRit). To derive the building blocks and associated methods software and requirements engineering approaches were utilized. Furthermore, a process-oriented approach was chosen, as information required in the creating process of ethics committee proposals remain unknown in the beginning of planning an MDR-LT. Here, we derived the needed steps from medical product certification. This was done as the medical product certification itself also communicates a process-oriented approach rather than merely focusing on content. A proposal was created for validation and inspection of applicability by using the proposed building blocks. The proposed best practice was tested and refined within SEMPER (Secondary Malignoma - Prospective Evaluation of the

  5. Context matters: volunteer bias, small sample size, and the value of comparison groups in the assessment of research-based undergraduate introductory biology lab courses.

    Science.gov (United States)

    Brownell, Sara E; Kloser, Matthew J; Fukami, Tadashi; Shavelson, Richard J

    2013-01-01

    The shift from cookbook to authentic research-based lab courses in undergraduate biology necessitates the need for evaluation and assessment of these novel courses. Although the biology education community has made progress in this area, it is important that we interpret the effectiveness of these courses with caution and remain mindful of inherent limitations to our study designs that may impact internal and external validity. The specific context of a research study can have a dramatic impact on the conclusions. We present a case study of our own three-year investigation of the impact of a research-based introductory lab course, highlighting how volunteer students, a lack of a comparison group, and small sample sizes can be limitations of a study design that can affect the interpretation of the effectiveness of a course.

  6. Retaining volunteers in volunteer computing projects.

    Science.gov (United States)

    Darch, Peter; Carusi, Annamaria

    2010-09-13

    Volunteer computing projects (VCPs) have been set up by groups of scientists to recruit members of the public who are asked to donate spare capacity on their personal computers to the processing of scientific data or computationally intensive models. VCPs serve two purposes: to acquire significant computing capacity and to educate the public about science. A particular challenge for these scientists is the retention of volunteers as there is a very high drop-out rate. This paper develops recommendations for scientists and software engineers setting up or running VCPs regarding which strategies to pursue in order to improve volunteer retention rates. These recommendations are based on a qualitative study of volunteers in a VCP (climateprediction.net). A typology of volunteers has been developed, and three particularly important classes of volunteers are presented in this paper: for each type of volunteer, the particular benefits they offer to a project are described, and their motivations for continued participation in a VCP are identified and linked to particular strategies. In this way, those setting up a VCP can identify which types of volunteers they should be particularly keen to retain, and can then find recommendations to increase the retention rates of their target volunteers.

  7. Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers.

    Science.gov (United States)

    Caswell, Glenys; Hardy, Beth; Ewing, Gail; Kennedy, Sheila; Seymour, Jane

    2017-08-02

    Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers. To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers. Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers. The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable. The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace. © Article author(s) (or their employer(s) unless otherwise stated in the text of the

  8. INEDITHOS: a Hospital Pedagogy project devoted to improving the quality of life of children and young people with rare diseases from the intervention, and research with university volunteering.

    Directory of Open Access Journals (Sweden)

    Francisca NEGRE BENNASAR

    2018-01-01

    Full Text Available This paper presents an experience in Hospital Pedagogy organized by the University of the Balearic Islands. This project is called INEDITHOS and its main objective is to work into improve the quality of life of children and youth with Rare Diseases. The project works in three lines of intervention: psycho-pedagogical support to patients and their families, research to respond to the needs that are detected in this area and the training of university students who collaborates in the project, using the Service Learning methodology. The long trajectory of the project that began in 2003 has made it possible to consolidate the three interventions resulting in a non-profit association with the same name. This result is complemented by the growing involvement of other Associations such as ABAIMAR and FEDER with which close collaboration is maintained. It is also worth noting the increase in the number of volunteers, which allows to offer attention to a higher number of affected while improving the quality of the interventions made thanks to the collaboration and involvement of students and teachers who, through the methodology of Learning and Service, carry out activities and elaborate end-of-degree and master’s work based on the needs identified in the volunteer interventions. INEDITHOS has introduced Rare Diseases in the university context sensitizing a large part of the Educational Community.

  9. Evaluation of institutional cancer registries in Colombia

    Directory of Open Access Journals (Sweden)

    Luis Gabriel Cuervo

    1999-09-01

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

  10. The stresses of hospice volunteer work.

    Science.gov (United States)

    Brown, Mary V

    2011-05-01

    The purpose of this phenomenological study was to explore the interpretation of stress, the appraisal of the stressors, as well as the top stressors experienced by hospice volunteers. Individual semistructured interviews were conducted with 15 hospice volunteers. The interviews were digitally recorded, transcribed, and analyzed, using qualitative research methods. Although the results indicated that the hospice volunteers did not perceive their work as stressful, 2 main themes regarding challenging experiences did emerge. Hospice-related issues and personal issues were of concern to the volunteers. In addition, the timing of the stressors revealed that the most stress was felt at the beginning of their volunteer services, which has implications for hospice volunteer coordinators as they support their volunteers in the field.

  11. The Danish Lung Cancer Registry

    DEFF Research Database (Denmark)

    Jakobsen, Erik; Rasmussen, Torben Riis

    2016-01-01

    AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... as a source for research regarding lung cancer in Denmark and in comparisons with other countries....

  12. Methodology of clinical research in rare diseases: development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates.

    Science.gov (United States)

    de Blieck, Elisabeth A; Augustine, Erika F; Marshall, Frederick J; Adams, Heather; Cialone, Jennifer; Dure, Leon; Kwon, Jennifer M; Newhouse, Nicole; Rose, Katherine; Rothberg, Paul G; Vierhile, Amy; Mink, Jonathan W

    2013-07-01

    Juvenile neuronal ceroid lipofuscinosis (JNCL; Batten disease) is a rare, inherited, fatal lysosomal storage childhood disorder. True for many rare diseases, there are no treatments that impact the course of JNCL. The University of Rochester Batten Center's (URBC) mission is to find treatments to slow, halt, or prevent JNCL. Our initial objective was to develop clinical research infrastructure preparatory to clinical trials, establish a JNCL research cohort, construct a disease-specific clinical outcome measure, and validate a non-invasive diagnostic sampling method. The long-term objective is to design and implement JNCL clinical trials. The Unified Batten Disease Rating Scale (UBDRS) was developed. The Batten Disease Support and Research Association (BDSRA) referred participants; annual BDSRA meetings provided a mobile research setting for registry enrollment and UBDRS piloting. Neuropsychological examinations were performed, enabling external validation of the UBDRS. Buccal epithelial cell collection for genotyping was introduced. Telemedicine for remote UBDRS assessment was piloted. The registry enrolled 198 families representing 237 children with NCL. The UBDRS was piloted, was validated and has been used to collect natural history data from 120 subjects. Funding and regulatory approval were obtained for a recently launched phase II clinical trial. Several additional lines of inquiry were reported. The registry and BDSRA collaboration have enabled development of a clinical rating scale, natural history and neuropsychological studies, and genetic studies for disease confirmation. This work highlights an approach for preparatory natural history research and infrastructure development needed to facilitate efficient implementation of clinical trials in rare diseases. Copyright © 2013 Elsevier Inc. All rights reserved.

  13. The Effect of Motivational Practices on Volunteer Motivation to ...

    African Journals Online (AJOL)

    The study assesses whether organizations' motivational practices affect volunteer motivation and levels of performance. This study was guided by the following two research questions: first, what motivation practices exist in Volunteer Involving Organizations and whether such affect volunteers' motivation to volunteer again?

  14. Volunteering, income and health.

    Science.gov (United States)

    Detollenaere, Jens; Willems, Sara; Baert, Stijn

    2017-01-01

    Separate literatures have related volunteering to health gains and income gains. We study the association between volunteering, income and health within one statistical framework. A state-of-the-art mediation analysis is conducted on data concerning the health, volunteering and sociodemographic characteristics of 42926 individuals within 29 European countries. We find that volunteering is positively associated to self-rated health. This association is partially mediated by household income.

  15. The contemporary management of prostate cancer in the United States: lessons from the cancer of the prostate strategic urologic research endeavor (CapSURE), a national disease registry.

    Science.gov (United States)

    Cooperberg, Matthew R; Broering, Jeanette M; Litwin, Mark S; Lubeck, Deborah P; Mehta, Shilpa S; Henning, James M; Carroll, Peter R

    2004-04-01

    The epidemiology and treatment of prostate cancer have changed dramatically in the prostate specific antigen era. A large disease registry facilitates the longitudinal observation of trends in disease presentation, management and outcomes. The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national disease registry of more than 10000 men with prostate cancer accrued at 31 primarily community based sites across the United States. Demographic, clinical, quality of life and resource use variables are collected on each patient. We reviewed key findings from the data base in the last 8 years in the areas of disease management trends, and oncological and quality of life outcomes. Prostate cancer is increasingly diagnosed with low risk clinical characteristics. With time patients have become less likely to receive pretreatment imaging tests, less likely to pursue watchful waiting and more likely to receive brachytherapy or hormonal therapy. Relatively few patients treated with radical prostatectomy in the database are under graded or under staged before surgery, whereas the surgical margin rate is comparable to that in academic series. CaPSURE data confirm the usefulness of percent positive biopsies in risk assessment and they have further been used to validate multiple preoperative nomograms. CaPSURE results strongly affirm the necessity of patient reported quality of life assessment. Multiple studies have compared the quality of life impact of various treatment options, particularly in terms of urinary and sexual function, and bother. The presentation and management of prostate cancer have changed substantially in the last decade. CaPSURE will continue to track these trends as well as oncological and quality of life outcomes, and will continue to be an invaluable resource for the study of prostate cancer at the national level.

  16. 'Real-world' atrial fibrillation management in Europe: observations from the 2-year follow-up of the EURObservational Research Programme-Atrial Fibrillation General Registry Pilot Phase.

    Science.gov (United States)

    Proietti, Marco; Laroche, Cécile; Opolski, Grzegorz; Maggioni, Aldo P; Boriani, Giuseppe; Lip, Gregory Y H

    2017-05-01

    Atrial fibrillation (AF) is commonly associated with a high risk of stroke, thromboembolism, and mortality. The 1-year follow-up of the EURObservational Research Programme-Atrial Fibrillation (EORP-AF) Pilot Registry demonstrated a high mortality but good outcomes with European Society of Cardiology guideline-adherent therapy. Whether these 'real-world' observations on patients managed by European cardiologists extend to 2 years remains uncertain. In this report from the EORP-AF General Registry Pilot Phase, we provide data on the 2-year follow-up outcomes. Consistent with the 1-year follow-up report, only a small proportion of patients were symptomatic (24.9%), with minor differences between the different AF subtypes. Persistence of oral anticoagulant (OAC) therapy remains high at 2-years, with ∼80% of patients treated with OAC. The prescribing rates of non-vitamin K antagonist oral anticoagulants are progressively increasing (13.7% at 2 years). Rate and rhythm control approaches remained consistent across the entire follow-up observation. Overall mortality rates remained high, with 5.0% of patients dead during the 2-year follow-up, mostly due to cardiovascular causes (61.8%). Atrial fibrillation readmissions were frequent, particularly related to arrhythmias and heart failure. On multivariate analyses, any cardiovascular reason for admission rather than AF was significantly associated with increased mortality during the 2-year follow-up. In this 2-year follow-up report from EORP-AF, mortality rates with AF remain high from cardiovascular causes, despite the high prevalent use of OAC. Improved management strategies to reduce major adverse outcomes in AF patients are needed. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2016. For permissions please email: journals.permissions@oup.com.

  17. Intergenerational Transmission of Volunteering

    NARCIS (Netherlands)

    Bekkers, René

    2007-01-01

    In this article, I investigate the strength of intergenerational transmission of volunteering for non-profit associations in The Netherlands. Data from the Family Survey of the Dutch Population 2000 reveal that there are significant relations between current volunteering and parental volunteering in

  18. Data privacy management and data quality monitoring in the German Centre for Cardiovascular Research's multicentre TranslatiOnal Registry for CardiomyopatHies (DZHK‐TORCH)

    Science.gov (United States)

    Schwaneberg, Thea; Weitmann, Kerstin; Dösch, Andreas; Seyler, Claudia; Bahls, Thomas; Geidel, Lars; Stahl, Dana; Lee, Mahsa; Kraus, Monika; Katus, Hugo A.

    2017-01-01

    Abstract Aims The multicentric TranslatiOnal Registry for CardiomyopatHies (TORCH) of the German Centre for Cardiovascular Research aims to recruit 2300 patients with non‐ischemic cardiomyopthies. Methods and results The investigations were performed after standard operating procedures. The data are collected in standardized electronic case report forms provided by the data holding of the central data management of the German Centre for Cardiovascular Research using secuTrial (interActive Systems GmbH, Berlin, Germany). The personal‐identifying data and informed consent are collected, stored, and quality‐checked by the independent Trusted Third Party in Greifswald. The quality management of the medical data is performed by the data and quality centre Greifswald. In December 2014, the recruitment for TORCH has started. Currently, data and biomaterial from about 1397 patients and more than 74 500 biomaterial aliquots were collected. Regular study centre‐specific quality reports address completeness and plausibility of data and provide detailed information about current missing or implausible data entries to improve the data quality by using a query management in addition. Conclusions A regular quality control and reporting improve the data quality in TORCH and will support high‐quality data analysis and the translation of research results into routine care. PMID:28742243

  19. Data privacy management and data quality monitoring in the German Centre for Cardiovascular Research's multicentre TranslatiOnal Registry for CardiomyopatHies (DZHK-TORCH).

    Science.gov (United States)

    Schwaneberg, Thea; Weitmann, Kerstin; Dösch, Andreas; Seyler, Claudia; Bahls, Thomas; Geidel, Lars; Stahl, Dana; Lee, Mahsa; Kraus, Monika; Katus, Hugo A; Hoffmann, Wolfgang

    2017-11-01

    The multicentric TranslatiOnal Registry for CardiomyopatHies (TORCH) of the German Centre for Cardiovascular Research aims to recruit 2300 patients with non-ischemic cardiomyopthies. The investigations were performed after standard operating procedures. The data are collected in standardized electronic case report forms provided by the data holding of the central data management of the German Centre for Cardiovascular Research using secuTrial (interActive Systems GmbH, Berlin, Germany). The personal-identifying data and informed consent are collected, stored, and quality-checked by the independent Trusted Third Party in Greifswald. The quality management of the medical data is performed by the data and quality centre Greifswald. In December 2014, the recruitment for TORCH has started. Currently, data and biomaterial from about 1397 patients and more than 74 500 biomaterial aliquots were collected. Regular study centre-specific quality reports address completeness and plausibility of data and provide detailed information about current missing or implausible data entries to improve the data quality by using a query management in addition. A regular quality control and reporting improve the data quality in TORCH and will support high-quality data analysis and the translation of research results into routine care. © 2017 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of the European Society of Cardiology.

  20. The Danish Heart Registry

    Directory of Open Access Journals (Sweden)

    Özcan C

    2016-10-01

    Full Text Available Cengiz Özcan,1,2 Knud Juel,1 Jens Flensted Lassen,3 Lene Mia von Kappelgaard,1 Poul Erik Mortensen,4 Gunnar Gislason1,2 1The National Institute of Public Health, University of Southern Denmark, Copenhagen K, Denmark; 2Department of Cardiology, Copenhagen University Hospital Gentofte, Hellerup, Denmark; 3Department of Cardiology, The Heart Center, Copenhagen University Hospital Rigshospitalet, Copenhagen Ø, Denmark; 4Department of Thoracic Surgery, Odense University Hospital, Odense C, Denmark Aim: The Danish Heart Registry (DHR seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. Study population: All adult ($15 years patients undergoing coronary angiography (CAG, percutaneous coronary intervention (PCI, coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. Main variables: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR and WDHR. For each type of procedure, up to 70 variables are registered in the DHR. Since 2010, the data quality protocol encompasses fulfillment of web-based validation rules of daily-submitted records and yearly approval of the data by the EDHR and WDHR. Descriptive data: The data collection on procedure has been complete for PCI and surgery since 2000, and for CAG as of 2006. From 2000 to 2014, the number of CAG, PCI, and surgical procedures changed by 231%, 193%, and 99%, respectively. Until the end of 2014, a total of 357,476 CAG, 131,309 PCI, and 60,831 surgical procedures had been performed, corresponding to 249,445, 100,609, and 55,539 first-time patients, respectively. The DHR generally has a high level of completeness (1–missing of each procedure (.90% when compared to the National Patient Registry. Variables important for assessing the quality of care have

  1. Facility Registry Service (FRS)

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...

  2. Central registry in psychiatry: A structured review

    Directory of Open Access Journals (Sweden)

    Jyoti Prakash

    2014-01-01

    Full Text Available 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.

  3. Segregation, Jim Crow, Racism, Embodied History & the People’s Health: Implications for Cancer Registries, Research & Prevention

    Science.gov (United States)

    Dr. Nancy Krieger is Professor of Social Epidemiology, in the Department of Social and Behavioral Sciences at the Harvard T.H. Chan School of Public Health and Director of the HSPH Interdisciplinary Concentration on Women, Gender, and Health.  She is an internationally recognized social epidemiologist, with a background in biochemistry, philosophy of science, and the history of public health, combined with over 30 years of activism linking issues involving social justice, science, and health.  In 2004, she became an ISI highly cited scientist (reaffirmed: 2015 ISI update), a group comprising “less than one-half of one percent of all publishing researchers,” and in 2013 was the recipient of the Wade Hampton Frost Award from the Epidemiology Section of the American Public Health Association; in 2015, she was awarded the American Cancer Society Clinical Research Professorship. Dr. Krieger’s work addresses three topics: (1) conceptual frameworks to understand, analyze, and improve the people’s health, including the ecosocial theory of disease distribution she has been developing since 1994 and its focus on embodiment and equity; (2) etiologic research on societal determinants of population health and health inequities; and (3) methodologic research on improving monitoring of health inequities.  She is author of Epidemiology and The People’s Health: Theory and Context (Oxford University Press, 2011), editor of Embodying Inequality: Epidemiologic Perspectives (Baywood Press, 2004) and co-editor, with Glen Margo, of AIDS: The Politics of Survival (Baywood Publishers, 1994), and, with Elizabeth Fee, of Women’s Health, Politics, and Power:  Essays on Sex/Gender, Medicine, and Public Health (Baywood Publishers, 1994).  In 1994, she co-founded, and still chairs, the Spirit of 1848 Caucus of the American Public Health Association, which is concerned with the links between social justice and public health.  Dr. Krieger received her PhD in Epidemiology from the

  4. Is the large simple trial design used for comparative, post-approval safety research? A review of a clinical trials registry and the published literature.

    Science.gov (United States)

    Reynolds, Robert F; Lem, Joanna A; Gatto, Nicolle M; Eng, Sybil M

    2011-10-01

    Post-approval, observational drug safety studies face well known difficulties in controlling for confounding, particularly confounding by indication for drug use. A study design that addresses confounding by indication is the large simple trial (LST). LSTs are characterized by large sample sizes, often in the thousands; broad entry criteria consistent with the approved medication label; randomization based on equipoise, i.e. neither physician nor patient believes that one treatment option is superior; minimal, streamlined data collection requirements; objectively-measured endpoints (e.g. death, hospitalization); and follow-up that minimizes interventions or interference with normal clinical practice. In theory then, the LST is a preferred study design for drug and vaccine safety research because it controls for biases inherent to observational research while still providing results that are generalizable to 'real-world' use. To evaluate whether LSTs are used for comparative safety evaluation and if the design is, in fact, advantageous compared with other designs, we conducted a review of the published literature (1949 through 31 December 2010) and the ClinicalTrials.gov registry (2000 through 31 December 2010). Thirteen ongoing or completed safety LSTs were identified. The design has rarely been used in comparative drug safety research, which is due to the operational, financial and scientific hurdles of implementing the design. The studies that have been completed addressed important clinical questions and, in some cases, led to re-evaluation of medical practice. We conclude the design has demonstrated utility for comparative safety research of medicines and vaccines if the necessary scientific and operational conditions for its use are met.

  5. The liquid organization of volunteer tourism

    DEFF Research Database (Denmark)

    Steele, Jessica; Dredge, Dianne

    2017-01-01

    Drawing from developments in sociology and organizational studies, this paper argues for a new understanding of volunteer tourism as liquid organization. It aims to explore the organization of volunteer tourism using a liquid organization perspective and to better understand the potential...... implications of this liquidity on the responsibility of volunteer tourism organizations to host com- munities. The analysis is based on data collected from 80 volunteer tourism organizations. The findings reveal that the volunteer tourism organizations show characteristics of liquid organiza- tion to varying...... degrees. The significance of the research is to problematize the way in which the institutional characteristics of volunteer tourism are (not) conceptualized in current literature and to introduce liquid organization as a means of reinvigorating debate about responsibility....

  6. The liquid organization of volunteer tourism:

    DEFF Research Database (Denmark)

    Steele, Jessica; Dredge, Dianne

    2017-01-01

    Drawing from developments in sociology and organizational studies, this paper argues for a new understanding of volunteer tourism as liquid organization. It aims to explore the organization of volunteer tourism using a liquid organization perspective and to better understand the potential...... implications of this liquidity on the responsibility of volunteer tourism organizations to host com- munities. The analysis is based on data collected from 80 volunteer tourism organizations. The findings reveal that the volunteer tourism organizations show characteristics of liquid organiza- tion to varying...... degrees. The significance of the research is to problematize the way in which the institutional characteristics of volunteer tourism are (not) conceptualized in current literature and to introduce liquid organization as a means of reinvigorating debate about responsibility....

  7. Reflections: Volunteering at Home.

    Science.gov (United States)

    Hu, Amanda

    2016-08-01

    Many young people look forward to volunteering abroad and overlook the ample volunteer opportunities at home. There are several advantages to volunteering at home: you help people in your own community; you can make a long-term commitment; and you have continuity of care for your patients. There are >1200 free clinics in the United States whose main goal is to provide care to the indigent population. These free clinics are always looking for volunteers with specialized medical training. This article reviews the medically related and unrelated volunteer opportunities available in the United States. Volunteering at home is a worthwhile experience, and I encourage the otolaryngology community to explore these opportunities. © American Academy of Otolaryngology—Head and Neck Surgery Foundation 2016.

  8. Olympic Games volunteering genesis

    Directory of Open Access Journals (Sweden)

    Oleksandr Tomenko

    2017-04-01

    Full Text Available Purpose: to consider the development of volunteer activity in relation to the Olympic Games. Material & Methods: theoretical scientific works of domestic and foreign scientists on the development of volunteer activities regarding their participation in the Olympic Games are analyzed, considered the main legal documents relating to the Olympic sport. Results: Statistical indicators of participation of volunteers in the Winter and Summer Olympics Games are analyzed and presented. The role and significance of volunteers' activity in the organization and holding of the Olympic Games are revealed. Conclusion: evolution of the volunteer movement, with reference to the Olympic Games, originates from the first games that took place in 1896 in Athens. To date, volunteers are an integral part of the organization and holding of the Olympic Games, their activities help to solve a number of organizational issues, the creation of a corresponding atmosphere and image at a sporting event, largely determine the success of games.

  9. The Danish HD Registry

    DEFF Research Database (Denmark)

    Gilling, M.; Budtz-Jorgensen, E.; Boonen, S. E.

    2017-01-01

    The Danish Huntington's Disease Registry (DHR) is a nationwide family registry comprising 14 245 individuals from 445 Huntington's disease (HD) families of which the largest family includes 845 individuals in 8 generations. 1136 DNA and/or blood samples and 18 fibroblast cultures are stored...

  10. Fractional Flow Reserve and Cardiac Events in Coronary Artery Disease: Data From a Prospective IRIS-FFR Registry (Interventional Cardiology Research Incooperation Society Fractional Flow Reserve).

    Science.gov (United States)

    Ahn, Jung-Min; Park, Duk-Woo; Shin, Eun-Seok; Koo, Bon-Kwon; Nam, Chang-Wook; Doh, Joon-Hyung; Kim, Jun Hong; Chae, In-Ho; Yoon, Jung-Han; Her, Sung-Ho; Seung, Ki-Bae; Chung, Woo-Young; Yoo, Sang-Yong; Lee, Jin Bae; Choi, Si Wan; Park, Kyungil; Hong, Taek Jong; Lee, Sang Yeub; Han, Minkyu; Lee, Pil Hyung; Kang, Soo-Jin; Lee, Seung-Whan; Kim, Young-Hak; Lee, Cheol Whan; Park, Seong-Wook; Park, Seung-Jung

    2017-06-06

    We evaluated the prognosis of deferred and revascularized coronary stenoses after fractional flow reserve (FFR) measurement to assess its revascularization threshold in clinical practice. The IRIS-FFR registry (Interventional Cardiology Research In-cooperation Society Fractional Flow Reserve) prospectively enrolled 5846 patients with ≥1coronary lesion with FFR measurement. Revascularization was deferred in 6468 lesions and performed in 2165 lesions after FFR assessment. The primary end point was major adverse cardiac events (cardiac death, myocardial infarction, and repeat revascularization) at a median follow-up of 1.9 years and analyzed on a per-lesion basis. A marginal Cox model accounted for correlated data in patients with multiple lesions, and a model to predict per-lesion outcomes was adjusted for confounding factors. For deferred lesions, the risk of major adverse cardiac events demonstrated a significant, inverse relationship with FFR (adjusted hazard ratio, 1.06; 95% confidence interval, 1.05-1.08; P <0.001). However, this relationship was not observed in revascularized lesions (adjusted hazard ratio, 1.00; 95% confidence interval, 0.98-1.02; P =0.70). For lesions with FFR ≥0.76, the risk of major adverse cardiac events was not significantly different between deferred and revascularized lesions. Conversely, in lesions with FFR ≤0.75, the risk of major adverse cardiac events was significantly lower in revascularized lesions than in deferred lesions (for FFR 0.71-0.75, adjusted hazard ratio, 0.47; 95% confidence interval, 0.24-0.89; P =0.021; for FFR ≤0.70, adjusted hazard ratio 0.47; 95% confidence interval, 0.26-0.84; P =0.012). This large, prospective registry showed that the FFR value was linearly associated with the risk of cardiac events in deferred lesions. In addition, revascularization for coronary artery stenosis with a low FFR (≤0.75) was associated with better outcomes than the deferral, whereas for a stenosis with a high FFR (≥0

  11. Chinese SLE Treatment and Research group (CSTAR) registry VII: prevalence and clinical significance of serositis in Chinese patients with systemic lupus erythematosus.

    Science.gov (United States)

    Zhao, J; Bai, W; Zhu, P; Zhang, X; Liu, S; Wu, L; Ma, L; Bi, L; Zuo, X; Sun, L; Huang, C; Tian, X; Li, M; Zhao, Y; Zeng, X

    2016-05-01

    To investigate both the prevalence and clinical characteristics of serositis in Chinese patients with systemic lupus erythematosus (SLE) in a large cohort in the Chinese SLE Treatment and Research group (CSTAR) database. A prospective cross-sectional study of patients with SLE was conducted based on the data from the CSTAR registry. Serositis was defined according to the 1999 revised American College of Rheumatology (ACR) criteria for SLE - that is, pleuritis/pleural effusion and/or pericarditis/pericardial effusion detected by echocardiography, chest X-ray or chest computerized tomography (CT) scan. Peritonitis/peritoneal effusion were confirmed by abdominal ultrasonography. We analysed the prevalence and clinical associations of serositis with demographic data, organ involvements, laboratory findings and SLE disease activity. Of 2104 patients with SLE, 345 were diagnosed with serositis. The prevalence of lupus nephritis (LN), interstitial lung disease and pulmonary arterial hypertension, as well as the presence of leukocytopenia, thrombocytopenia, hypocomplementemia and anti-dsDNA antibodies was significantly higher in patients with serositis (P Lupus-related peritonitis had similar clinical manifestations and laboratory profiles as serositis caused by SLE. There is a significant association of nephropathy, interstitial lung disease, pulmonary arterial hypertension, hypocomplementemia, leukocytopenia, thrombocytopenia and elevated anti-dsDNA antibodies with serositis. The results suggest that higher SLE disease activity contributes to serositis development, and should be treated aggressively. © The Author(s) 2016.

  12. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M

    2001-01-01

    Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with ...

  13. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M

    2001-01-01

    Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...

  14. Matching Expectations for Successful University Student Volunteering

    Science.gov (United States)

    Paull, Megan; Omari, Maryam; MacCallum, Judith; Young, Susan; Walker, Gabrielle; Holmes, Kirsten; Haski-Leventha, Debbie; Scott, Rowena

    2017-01-01

    Purpose: The purpose of this paper is to demonstrate the importance of expectation formation and matching for university student volunteers and their hosts. Design/methodology/approach: This research involved a multi-stage data collection process including interviews with student volunteers, and university and host representatives from six…

  15. THE STUDY OF SELF-CONCEPT BETWEEN VOLUNTEER AND NON-VOLUNTEER STUDENTS IN SPORT OF UNIVERSITIES

    Directory of Open Access Journals (Sweden)

    Reza Andam

    2013-03-01

    Full Text Available Understanding personality characteristics of volunteers are important for their recruitment and retention in sport associations. This study compared self-concept as a personality characteristic between volunteer and non-volunteer students in sport associations. The method of this research was survey and descriptive. The statistical population consisted of volunteer and non-volunteer students in sport associations of Iran universities. Two hundred and fifty two students (120 volunteers and 132 non-volunteers from 10 universities were selected as subjects by using random clustered sampling method. Pyryt and Mandaglio Self Perceived Survey (PMSPS was used to collect the data. The content and face reliability of questionnaire was checked and confirmed. Cronbach’s alpha coefficient was used to test the reliability of the questionnaire (alfa=0.90. Independent t test and U Mann-Whitney test were used for comparison of the factors between volunteers and non-volunteers. Findings of this study indicated that there was a significant difference between volunteer and non-volunteer students in social and athletic self-concept. The mean of scientific and value factors were higher in volunteers than non-volunteers, however, they were not statistically significant. We concluded that the nature of sport (active and sport volunteering (social encourage students who have higher self-concept for volunteering. Moreover, the characteristics of sport associations can increase self-concept in sport volunteers.

  16. Validation of Surgical Intensive Care-Infection Registry: a medical informatics system for intensive care unit research, quality of care improvement, and daily patient care.

    Science.gov (United States)

    Golob, Joseph F; Fadlalla, Adam M A; Kan, Justin A; Patel, Nilam P; Yowler, Charles J; Claridge, Jeffrey A

    2008-08-01

    We developed a prototype electronic clinical information system called the Surgical Intensive Care-Infection Registry (SIC-IR) to prospectively study infectious complications and monitor quality of care improvement programs in the surgical and trauma intensive care unit. The objective of this study was to validate SIC-IR as a successful health information technology with an accurate clinical data repository. Using the DeLone and McLean Model of Information Systems Success as a framework, we evaluated SIC-IR in a 3-month prospective crossover study of physician use in one of our two surgical and trauma intensive care units (SIC-IR unit versus non SIC-IR unit). Three simultaneous research methodologies were used: a user survey study, a pair of time-motion studies, and an accuracy study of SIC-IR's clinical data repository. The SIC-IR user survey results were positive for system reliability, graphic user interface, efficiency, and overall benefit to patient care. There was a significant decrease in prerounding time of nearly 4 minutes per patient on the SIC-IR unit compared with the non SIC-IR unit. The SIC-IR documentation and data archiving was accurate 74% to 100% of the time depending on the data entry method used. This accuracy was significantly improved compared with normal hand-written documentation on the non SIC-IR unit. SIC-IR proved to be a useful application both at individual user and organizational levels and will serve as an accurate tool to conduct prospective research and monitor quality of care improvement programs.

  17. [Trauma registry and injury].

    Science.gov (United States)

    Shapira, S C

    2001-10-01

    The trauma registry network constitutes an essential database in every injury prevention system. In order to rationally estimate the extent of injury in general, and injuries from traffic accidents in particular, the trauma registry systems should contain the most comprehensive and broad database possible, in line with the operational definitions. Ideally, the base of the injury pyramid should also include mild injuries and even "near-misses". The Israeli National Trauma Registry has come a long way in the last few years. The eventual inclusion of all trauma centers in Israel will enable the establishment of a firm base for the allocation of resources by decision-makers.

  18. The Norwegian Multiple Sclerosis Registry and Biobank.

    Science.gov (United States)

    Myhr, K-M; Grytten, N; Torkildsen, Ø; Wergeland, S; Bø, L; Aarseth, J H

    2015-01-01

    Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system with unknown cause and various benefits from disease modifying therapies. Systematic recording of data into national MS registries is therefore needed to optimize treatment and define the pathogenesis of the disease. The Norwegian MS Registry and Biobank was established for systematic collection of clinical and epidemiological data, as well as biological samples. Data collection is based on informed consent from the individual patients and recordings by treating neurologists. All researchers have, by application, access to data and biological samples from the Norwegian Multiple Sclerosis Registry and Biobank. By this combined effort from both patients and healthcare personnel, the Registry and Biobank aims to facilitate research for improved understanding of disease mechanisms and improved health care in MS. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  19. Volunteer Tourism Program Development, Case Vietnam Heritage Travel

    OpenAIRE

    Nguyen, Leminh

    2012-01-01

    The purpose of this thesis project is to figure out what kinds of volunteer tourism programs should be developed for Vietnam Heritage Travel, a tour operator in Vietnam, and what business and volunteering factors need to be considered for the development. In order to answer those research questions, the thesis reviewed current studies and researches on volunteer tourism, including its definitions, theoretical frameworks and practices, various types of projects worldwide and overview of volunt...

  20. Effects of Surgery and Antiplatelet Therapy in Ten-Year Follow-Up from the Registry Study of Research Committee on Moyamoya Disease in Japan.

    Science.gov (United States)

    Yamada, Satoshi; Oki, Koichi; Itoh, Yoshiaki; Kuroda, Satoshi; Houkin, Kiyohiro; Tominaga, Teiji; Miyamoto, Susumu; Hashimoto, Nobuo; Suzuki, Norihiro

    2016-02-01

    Despite the common practice of surgery and antiplatelet therapy for the prevention of recurrent stroke in patients with moyamoya disease, the benefit of these treatments is controversial. We analyzed the stroke recurrence rate in the Registry Study of Research Committee on Moyamoya Disease in Japan funded by the Health, Labor and Welfare Ministry of Japan. An annual follow-up study of the registered cases was continued for 10 years. The rate of recurrent stroke, including cerebral infarction and hemorrhage but not transient ischemic attack and seizure, was evaluated with Kaplan-Meier analysis. The proportion of childhood-onset cases decreased in recently registered cases (within 10 years, n = 541) compared to remote cases (> 10 years, n = 735). Among types at disease onset in adult-onset cases, intracerebral hemorrhage decreased recently. In recent cases, the rate of subsequent cerebral hemorrhage was much higher in the hemorrhagic group (10.9 ± 3.3%/5 years) than in the ischemic group (2.0 ± .9%/5 years). The recurrence rate of cerebral infarction was lower in the surgery group (1.8 ± .9%/5 years) than in the nonsurgery group (3.8 ± 2.2%/5 years). In the adult-onset ischemic group, the proportion of surgically treated patients increased and their recurrence rate was lower than that of nonsurgery patients. In the ischemic group, the rate of cerebral infarction was not significantly different between the antiplatelet subgroup and the non-antiplatelet subgroup, whereas the rate of cerebral hemorrhage was higher in the non-antiplatelet subgroup than in the antiplatelet subgroup. Our results suggest revascularization surgery may suppress recurrent ischemic attacks in patients with moyamoya disease. Copyright © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved.

  1. Data Element Registry Services

    Data.gov (United States)

    U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...

  2. 911 Master PSAP Registry

    Data.gov (United States)

    Federal Communications Commission — Updated as of 5Oct2017. The Registry lists PSAPs by an FCC assigned identification number, PSAP Name, State, County, City, and provides information on any type of...

  3. Assessing the readiness of hospice volunteers to utilize technology.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Shaunfield, Sara; Oliver, Debra Parker; Demiris, George; Schneider, Greg

    2012-09-01

    Although hospice volunteer programs contribute to patient care, little is known about their utilization and adaptation of technology. A survey was posted to the Hospice Volunteer Association Web site to assess technology use among volunteer coordinators and volunteers. Results revealed that participants have access to computers, Internet, and e-mail at the hospice agency and routinely use cellular phones and e-mail. Despite the use of technology, communication problems with volunteers hindered the coordinator's ability to manage scheduling, training, and volunteer assignments for patient care. Coordinators and volunteers felt comfortable utilizing technology but were less comfortable using technology in the patients' home. Several areas are identified for development and integration of advanced technology in volunteer programs. Future research is needed to ease technology implementation and increase volunteer acceptance.

  4. Adherence to the World Cancer Research Fund/American Institute for Cancer Research lifestyle recommendations in colorectal cancer survivors : Results of the PROFILES registry

    NARCIS (Netherlands)

    Winkels, Renate M; van Lee, Linde; Beijer, Sandra; Bours, Martijn J; van Duijnhoven, Fränzel J B; Geelen, Anouk; Hoedjes, M.; Mols, F.; de Vries, Jeanne; Weijenberg, Matty P; Kampman, Ellen

    2016-01-01

    We examined adherence to the eight The World Cancer Research Foundation/American Institute for Cancer Research (WCRF/AICR) recommendations on diet, physical activity, and body weight among colorectal cancer survivors, and whether adherence was associated with intention to eat healthy and with the

  5. Engaged anthropology and corporate volunteering

    Directory of Open Access Journals (Sweden)

    Natália Blahová

    2015-12-01

    Full Text Available The aim of this paper is to present engaged anthropology and its methodological tools with a specific perspective of the research field and the position of the researcher with regard to research subjects. The study focuses on corporate volunteering as one of the forms of collaboration between the non-profit and the private sectors seeking solutions to social problems and community development. Volunteering projects contribute to the interlinking of the knowledge, skills, experience and resources of corporate employees and the representatives of the non-profit or the public sector. It is a part of the philanthropic strategy of companies which are willing to present themselves as entities responsible towards the environment in which they run their business, and towards their employees, partners and customers. Engaged anthropology can bring, through its methodological tools, a new perspective of corporate volunteering. Community-based participatory research on the process of knowledge creation includes all partners on an equal basis and identifies their unique contribution to problem solution and community development.

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

    Science.gov (United States)

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

    2016-01-01

    US transplant centers are required to report cancers in transplant recipients to the transplant network. The accuracy and completeness of these data, collected in the Scientific Registry of Transplant Recipients (SRTR), are unknown. We compared diagnoses in the SRTR and 15 linked cancer registries, for colorectal, liver, lung, breast, prostate, and kidney cancers, melanoma, and non-Hodgkin lymphoma (NHL). Among 187,384 transplants, 9323 cancers were documented in the SRTR or cancer registries. Only 36.8% of cancers were in both, with 47.5% and 15.7% of cases additionally documented solely in cancer registries or the SRTR, respectively. Agreement between the SRTR and cancer registries varied (kappa: 0.28 for liver cancer, 0.52–0.66 for lung, prostate, kidney, colorectum and breast cancers). Upon evaluation, some NHLs documented only in cancer registries were identified in the SRTR as another type of post-transplant lymphoproliferative disorder. Some SRTR-only cases were explained by miscoding (colorectal cancer instead of anal cancer, metastases as lung or liver cancers) or missed matches with cancer registries, partly due to out-migration from their catchment areas. Estimated sensitivity for identifying cancer was 52.5% for the SRTR and 84.3% for cancer registries. In conclusion, SRTR cancer data are substantially incomplete, limiting their usefulness for surveillance and research. PMID:27062091

  7. Corporate volunteering - motivation for voluntary work

    Directory of Open Access Journals (Sweden)

    Debora Azevedo

    2008-07-01

    Full Text Available Nowadays, when the welfare state is a responsibility of the entire society, organizations in the private sector assume co-responsibility for social issues. They are also pressured by the challenges presented by technological advances and the globalization , involving new parameters and requirements for quality. In this context, the concept of Corporate Social Responsibility (RSC emerges as an option for solutions to the issues related to the company and the whole community. Among the actions of the RSC is the Corporate Volunteering-program, which aims to promote / encourage employes to do voluntary work. A central issue when talking about volunteering is the withdrawal of these (SILVA and FEITOSA, 2002; TEODÓSIO, 1999 and, in accordance with the Community Solidarity (1997, one of the possible causes for the withdrawal is the lack of clarity as to the motives and expectations that lead the person to volunteer themselves. This study uses qualitative research and triangulation of feedback from volunteers, coordinators of volunteers and social organizations, to present a framework from which it is possible to analyze the various motivations for the volunteer work. Key words: Corporate Volunteering program. Volunteering. Corporate social responsibility.

  8. NASTEP Volunteer Request (CSA) -

    Data.gov (United States)

    Department of Transportation — Allows users to add themselves to a Service Area wide ?volunteer for emergency duty? list (was created after Gulf Coast Hurricanes). Approval and email by managers,...

  9. Volunteering and Organizational Diversity

    DEFF Research Database (Denmark)

    Henriksen, Lars Skov; Rosdahl, David

    2008-01-01

    ABSTRACT Background, data and methods The voluntary sector consists of a multitude of organizations and associations. They have different purposes, different activities, and various target groups. They vary in size, membership base, ideology, and political orientation. Some take care of their own...... of volunteering (culture, sports, hobby, education, health, social services, environment, housing and community, unions and work organizations, advice and legal assistance, political parties, international organizations, religion, and other). We propose a categorization which is theoretically meaningful...... volunteering within the three major welfare fields: social service, health, and education. It could be argued that this is a more heterogeneous type of volunteering, because some volunteers work in ‘service organizations' aiming at particular client groups (battered women, homeless, elderly people etc.) while...

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

    Science.gov (United States)

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

    2016-01-01

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

  11. Canadian Youth Volunteering Abroad: Rethinking Issues of Power and Privilege

    Science.gov (United States)

    Ngo, Mai

    2013-01-01

    This paper discusses the role of institutions in the ethical engagement of Canadian youth volunteers abroad. In recent years, researchers and practitioners in the international field have questioned the ethics of volunteering as part of development, with scrutiny on who actually benefits from volunteering initiatives. Since the 1960s, over 65,000…

  12. The Motivation to Volunteer: A Systemic Quality of Life Theory

    Science.gov (United States)

    Shye, Samuel

    2010-01-01

    A new approach to volunteer motivation research is developed. Instead of asking what motivates the volunteer (accepting "any" conceptual category), we ask to what extent volunteering rewards the individual with each benefit taken from a complete set of possible benefits. As a "complete set of benefits" we use the 16 human functioning modes…

  13. Volunteer motivation in special events for people with disabilities ...

    African Journals Online (AJOL)

    There has been little research attention in the South African context on volunteer motivation for special events for people with disabilities. This study explored the key factors that motivated volunteers to volunteer their services at three major sport events for people with disabilities in South Africa. A 28-item questionnaire was ...

  14. Indian transplant registry

    Directory of Open Access Journals (Sweden)

    Sunil Shroff

    2007-01-01

    Full Text Available An ′Indian transplant registry′ has been established over the past two years due to the efforts of the Indian Society of Organ Transplantation. This society is about 20 years old with over 450 members who are doctors and basic scientist. The registry is currently in the first phase of its development and can be partly viewed at www.transplantindia.com. The endeavor has been undertaken with the objective of having a centralized repository of information of the various transplants that are being undertaken in India. In its first phase of the registry ′Fast Fact′ retrospective short datasets are being captured that include the essential details of the transplant programme. The fast fact data includes the number of transplant done yearly, the sex ratio and type of transplant. So far thirteen major institutional data has been entered in the registry. In the second phase of the registry, over twenty fields are likely to be captured and all member institutions would be encouraged to enter the data prospectively. In the third phase data would be derived with ongoing audit features.. The society and its members have supported the formation of the registry and are enthusiastic about its potential.

  15. When Teaching and Volunteering Go Together: Exploring Participation Characteristics and Demographic Backgrounds of Senior Volunteer Teachers and Their Teaching Satisfaction

    Science.gov (United States)

    Leung, D. D. M.

    2016-01-01

    Senior volunteer teachers play important roles in learning programmes for the elderly. These volunteers' level of teaching satisfaction was assumed to influence programmes, their organizational behaviours and outcomes. However, scant research has focused specifically on volunteers' levels of satisfaction with teaching and how their satisfaction is…

  16. Interferon-free therapy for genotype 1 hepatitis C in liver transplant recipients: Real-world experience from the hepatitis C therapeutic registry and research network.

    Science.gov (United States)

    Brown, Robert S; O'Leary, Jacqueline G; Reddy, K Rajender; Kuo, Alexander; Morelli, Giuseppe J; Burton, James R; Stravitz, R Todd; Durand, Christine; Di Bisceglie, Adrian M; Kwo, Paul; Frenette, Catherine T; Stewart, Thomas G; Nelson, David R; Fried, Michael W; Terrault, Norah A

    2016-01-01

    Recurrent infection with the hepatitis C virus (HCV) after liver transplantation (LT) is associated with decreased graft and patient survival. Achieving sustained virological response (SVR) with antiviral therapy improves survival. Because interferon (IFN)-based therapy has limited efficacy and is poorly tolerated, there has been rapid transition to IFN-free direct-acting antiviral (DAA) regimens. This article describes the experience with DAAs in the treatment of posttransplant genotype (GT) 1 HCV from a consortium of community and academic centers (Hepatitis C Therapeutic Registry and Research Network [HCV-TARGET]). Twenty-one of the 54 centers contributing to the HCV-TARGET consortium participated in this study. Enrollment criteria included positive posttransplant HCV RNA before treatment, HCV GT 1, and documentation of use of a simeprevir (SMV)/sofosbuvir (SOF) containing DAA regimen. Safety and efficacy were assessed. SVR was defined as undetectable HCV RNA 64 days or later after cessation of treatment. A total of 162 patients enrolled in HCV-TARGET started treatment with SMV+SOF with or without ribavirin (RBV) following LT. The study population included 151 patients treated with these regimens for whom outcomes and safety data were available. The majority of the 151 patients were treated with SOF and SMV alone (n = 119; 79%) or with RBV (n = 32; 21%), The duration of therapy was 12 weeks for most patients, although 15 patients received 24 weeks of treatment. Of all patients receiving SOF/SMV with or without RBV, 133/151 (88%) achieved sustained virological response at 12 weeks after therapy and 11 relapsed (7%). One patient had virological breakthrough (n = 1), and 6 patients were lost to posttreatment follow-up. Serious adverse events occurred in 11.9%; 3 patients (all cirrhotic) died due to aspiration pneumonia, suicide, and multiorgan failure. One experienced LT rejection. IFN-free DAA treatment represents a major improvement over prior IFN

  17. The Danish Stroke Registry

    DEFF Research Database (Denmark)

    Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager

    2016-01-01

    AIM OF DATABASE: The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. STUDY POPULATION: All patients with acute stroke (from 2003) or TIA (from 2013) treated...... at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. MAIN VARIABLES: The registry holds prospectively collected data on key processes...... of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients...

  18. Chinese SLE treatment and research group registry: III. association of autoantibodies with clinical manifestations in Chinese patients with systemic lupus erythematosus.

    Science.gov (United States)

    Li, Jing; Leng, Xiaomei; Li, Zhijun; Ye, Zhizhong; Li, Caifeng; Li, Xiaofeng; Zhu, Ping; Wang, Zhengang; Zheng, Yi; Li, Xiangpei; Zhang, Miaojia; Tian, Xin-Ping; Li, Mengtao; Zhao, Jiuliang; Zhang, Feng-Chun; Zhao, Yan; Zeng, Xiaofeng

    2014-01-01

    We investigated the characteristics of Chinese SLE patients by analyzing the association between specific autoantibodies and clinical manifestations of 2104 SLE patients from registry data of CSTAR cohort. Significant (Poral ulcerations (Pmanifestations could provide clues for physicians to predict organ damages in SLE patients. We suggest that a thorough screening of autoantibodies should be carried out when the diagnosis of SLE is established, and repeated echocardiography annually in SLE patients with anti-RNP or anti-SSA antibody should be performed.

  19. The Qingdao Twin Registry

    DEFF Research Database (Denmark)

    Duan, Haiping; Ning, Feng; Zhang, Dongfeng

    2013-01-01

    In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants...... of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes...

  20. United States Transuranium Registry summary report, July 1, 1974 to October 1, 1975 to ERDA Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Norwood, W.D.; Newton, C.E. Jr.

    1975-11-01

    The primary purpose of the Registry is to protect the interests of workers, employers and the public by serving as a national focal point for the acquisition and provision of the latest and most precise information about the effects of the transuranic elements on man. This is being done by establishing the population at risk. To date some 9063 transuranium workers have been so identified. On a continuing basis, the best current estimates of the amount and location of any internal deposition of any of the transuranium elements in employees are being accumulated. These determinations have been improved by reconciliation with actual burdens found in various organs at autopsy or by alternate methods. Such employees are followed clinically and by epidemiological methods to determine whether there may be any adverse effects on such desposits on health or longevity. Registry statistics are given for the following sites: Hanford, Rocky Flats, Los Alamos, Savannah River, Mount, and Oak Ridge. The seven appendces contain information related to the Registry activities

  1. The public service-motivated volunteer devoting time or effort

    DEFF Research Database (Denmark)

    Costello, Joyce; Homberg, Fabian; Secchi, Davide

    2017-01-01

    and thus may inform subsequent empirical work. First, we address academic debates concerning the measurement of volunteer effort. Second, we propose using public service motivation (PSM) theory as a means to understand the motivation of volunteers across sectors. We suggest that different PSM dimensions......The purpose of this conceptual article is to further our understanding of how evolving volunteer trends impact on volunteering intensity. The aim is to provide clarity by applying to the volunteer literature a theoretical framework that can be adapted to different ways in which people volunteer...... may be more dominant in certain volunteer settings than others and incorporate person–organisation fit as a means to understand the relationship between PSM and volunteering intensity. Finally, this article proposes directions for future research....

  2. Motivations of German Hospice Volunteers: How Do They Compare to Nonhospice Volunteers and US Hospice Volunteers?

    Science.gov (United States)

    Stelzer, Eva-Maria; Lang, Frieder R

    2016-03-01

    We examined reasons of volunteering for hospice and nonhospice organizations in a study with 125 volunteers (22-93 years) from the United States and Germany. Motives of US and German hospice volunteers revealed similarities and few differences. Hospice volunteers are involved because they seek to help others, seek new learning experiences, seek social contacts, or seek personal growth. The US hospice volunteers reported motives related to altruistic concerns, enhancement, and social influence as more influential, while German hospice volunteers rated career expectations as being more important. Comparison of German hospice with nonhospice volunteers revealed stronger differences: German hospice volunteers scored higher on altruistic motives, while German nonhospice volunteers yielded higher scores on self-serving motives. Findings contribute to improved understanding of volunteering motivation and of activating or retaining hospice volunteers. © The Author(s) 2014.

  3. Research report--Volunteer infant feeding and care counselors: a health education intervention to improve mother and child health and reduce mortality in rural Malawi.

    Science.gov (United States)

    Rosato, Mikey; Lewycka, Sonia; Mwansambo, Charles; Kazembe, Peter; Phiri, Tambosi; Chapota, Hilda; Vergnano, Stefania; Newell, Marie-Louise; Osrin, David; Costello, Anthony

    2012-06-01

    The aim of this report is to describe a health education intervention involving volunteer infant feeding and care counselors being implemented in Mchinji district, Malawi. The intervention was established in January 2004 and involves 72 volunteer infant feeding and care counselors, supervised by 24 government Health Surveillance Assistants, covering 355 villages in Mchinji district. It aims to change the knowledge, attitudes and behaviour of women to promote exclusive breastfeeding and other infant care practices. The main target population are women of child bearing age who are visited at five key points during pregnancy and after birth. Where possible, their partners are also involved. The visits cover exclusive breastfeeding and other important neonatal and infant care practices. Volunteers are provided with an intervention manual and picture book. Resource inputs are low and include training allowances and equipment for counselors and supervisors, and a salary, equipment and materials for a coordinator. It is hypothesized that the counselors will encourage informational and attitudinal change to enhance motivation and risk reduction skills and self-efficacy to promote exclusive breastfeeding and other infant care practices and reduce infant mortality. The impact is being evaluated through a cluster randomised controlled trial and results will be reported in 2012.

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

    Science.gov (United States)

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

    2017-08-01

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

  5. Cancer Registry Data

    Centers for Disease Control (CDC) Podcasts

    2017-05-24

    Dr. Loria Pollack, a Senior Medical Epidemiologist, talks about the importance of cancer registry data to understanding how cancer affects the United States–now and in the future.  Created: 5/24/2017 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 5/24/2017.

  6. The Danish Twin Registry

    DEFF Research Database (Denmark)

    Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels

    2011-01-01

    Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been emp...

  7. Call for volunteers

    CERN Multimedia

    2008-01-01

    CERN is calling for volunteers from all members of the Laboratory for organizing the two exceptional Open days.CERN is calling for volunteers from all members of the Laboratory’s personnel to help with the organisation of these two exceptional Open Days, for the visits of CERN personnel and their families on the Saturday and above all for the major public Open Day on the Sunday. As for the 50th anniversary in 2004, the success of the Open Days will depend on a large number of volunteers. All those working for CERN as well as retired members of the personnel can contribute to making this event a success. Many guides will be needed at the LHC points, for the activities at the surface and to man the reception and information points. The aim of these major Open Days is to give the local populations the opportunity to discover the fruits of almost 20 years of work carried out at CERN. We are hoping for some 2000 volunteers for the two Open Days, on the Saturday from 9 a.m. to ...

  8. The Molecular Registry of Pituitary Adenomas (REMAH): A bet of Spanish Endocrinology for the future of individualized medicine and translational research.

    Science.gov (United States)

    Luque, Raúl M; Ibáñez-Costa, Alejandro; Sánchez-Tejada, Laura; Rivero-Cortés, Esther; Robledo, Mercedes; Madrazo-Atutxa, Ainara; Mora, Mireia; Álvarez, Clara V; Lucas-Morante, Tomás; Álvarez-Escolá, Cristina; Fajardo, Carmen; Castaño, Luis; Gaztambide, Sonia; Venegas-Moreno, Eva; Soto-Moreno, Alfonso; Gálvez, María Ángeles; Salvador, Javier; Valassi, Elena; Webb, Susan M; Picó, Antonio; Puig-Domingo, Manel; Gilabert, Montserrat; Bernabéu, Ignacio; Marazuela, Mónica; Leal-Cerro, Alfonso; Castaño, Justo P

    2016-01-01

    Pituitary adenomas are uncommon, difficult to diagnose tumors whose heterogeneity and low incidence complicate large-scale studies. The Molecular Registry of Pituitary Adenomas (REMAH) was promoted by the Andalusian Society of Endocrinology and Nutrition (SAEN) in 2008 as a cooperative clinical-basic multicenter strategy aimed at improving diagnosis and treatment of pituitary adenomas by combining clinical, pathological, and molecular information. In 2010, the Spanish Society of Endocrinology and Nutrition (SEEN) extended this project to national level and established 6 nodes with common protocols and methods for sample and clinical data collection, molecular analysis, and data recording in a common registry (www.remahnacional.com). The registry combines clinical data with molecular phenotyping of the resected pituitary adenoma using quantitative real-time PCR of expression of 26 genes: Pituitary hormones (GH-PRL-LH-FSH-PRL-ACTH-CGA), receptors (somatostatin, dopamine, GHRH, GnRH, CRH, arginine-vasopressin, ghrelin), other markers (Ki67, PTTG1), and control genes. Until 2015, molecular information has been collected from 704 adenomas, out of 1179 patients registered. This strategy allows for comparative and relational analysis between the molecular profile of the different types of adenoma and the clinical phenotype of patients, which may provide a better understanding of the condition and potentially help in treatment selection. The REMAH is therefore a unique multicenter, interdisciplinary network founded on a shared database that provides a far-reaching translational approach for management of pituitary adenomas, and paves the way for the conduct of combined clinical-basic innovative studies on large patient samples. Copyright © 2016 SEEN. Published by Elsevier España, S.L.U. All rights reserved.

  9. Danish National Lymphoma Registry

    Directory of Open Access Journals (Sweden)

    Arboe B

    2016-10-01

    Full Text Available Bente Arboe,1 Pär Josefsson,2 Judit Jørgensen,3 Jacob Haaber,4 Paw Jensen,5 Christian Poulsen,6 Dorthe Rønnov-Jessen,7 Robert S Pedersen,8 Per Pedersen,9 Mikael Frederiksen,10 Michael Pedersen,1 Peter de Nully Brown1 1Department of Hematology, Copenhagen University Hospital, Rigshospitalet, 2Department of Hematology, Copenhagen University Hospital, Herlev Hospital, Copenhagen, 3Department of Hematology, Aarhus University Hospital, Aarhus, 4Department of Hematology, Odense University Hospital, Odense, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Roskilde Hospital, Roskilde, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Holstebro Hospital, Holstebro, 9Department of Hematology, Esbjerg Hospital, Esbjerg, 10Department of Hematology, Haderslev Hospital, Haderslev, Denmark Aim of database: The Danish National Lymphoma Registry (LYFO was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. Study population: The LYFO database was established in 1982 as a seminational database including all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. Main variables: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis, and three process quality indicators (time from diagnosis until the start of treatment, the presence of relevant diagnostic markers, and inclusion rate in clinical protocols. Descriptive data: Approximately 23

  10. Predictors of changes in disease activity among children with juvenile dermatomyositis enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry.

    Science.gov (United States)

    Challa, Divya; Crowson, Cynthia S; Niewold, Timothy B; Reed, Ann M

    2018-04-01

    Determinants of changes in disease activity among patients with juvenile dermatomyositis (JDM) are unknown. Our objective was to develop predictive models to predict changes in disease activity using the CARRA Legacy Registry. The CARRA Legacy Registry included 658 subjects with definite or probably JDM with 297 subjects with a one follow-up visit after baseline, and we studied the 65 subjects with active disease at baseline. Linear regression models were used to build risk scores for changes in disease activity adjusted for baseline disease activity, age, sex, and disease duration. Disease activity improved from baseline to 6-month follow-up as measured by patient/parent global health score (median 4; p = 0.008), patient pain score (median 2; p = 0.014), physician global (median 4; p predicted less improvement and dysphagia/dysphonia (p = 0.033) predicted greater improvement in CMAS and baseline CMAS (R-square improved from 0.73 for adjustors alone to 0.86 for the full model). Disease characteristics can help identify patients who are less likely to improve over time. Risk scores to predict future changes in disease activity could be used to trigger more aggressive treatment earlier in the disease course.

  11. United States Transuranium Registry. Annual report, 1 October 1978-1 October 1979 to DOE Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Newton, C.E. Jr.

    1980-01-01

    This Registry was established in 1968 to protect the interests of workers, employers, and the public by serving as a national focal point for the acquisition and provision of precise information about transuranics in humans. This purpose is accomplished by studying the distribution and concentration of transuranics in man through the analysis of autopsy tissues of accupationally exposed workers; by comparing the estimates of body or chest burdens made during the life of a worker with estimates based on the analysis of tissues obtained after death; by seeking in autopsy histopathological changes that might be attributed to the effects of transuranics; and by studying the findings of animal experiments involving transuranics and comparing them with data from human beings who had received a transuranic deposition. Seven DOE contractor laboratories and several contractor licensees participate in the Registry by encouraging their staff members to sign releases of health physics and medical information and releases for autopsies. Data files and release records are kept at the Hanford Environmental Health Foundation, Richland, Washington

  12. Recording and Evaluating the Role of Volunteers Regarding Natural Hazards Prevention and Disaster Management in Greece

    Science.gov (United States)

    Papanikolaou, Ioannis; Papanikolaou, Dimitrios; Diakakis, Michalis; Deligiannakis, Georgios

    2013-04-01

    insured and not properly trained. The Civil Protection Research Center designed to provide training to civil protection officers and volunteers by the 2002 act, was never established. Moreover, following the economic crisis in Greece, its establishment was cancelled. Overall, volunteers are scattered in small groups with a predominant local supportive character and resources. However, despite the lack of support a few volunteer groups manage to organise and set up a significant network across the country. Two of these organizations are the ESEPA (The Voluntary Corp of Greek Firemen and Replanters) focused on forest fires and HRT (Hellenic Rescue Team) focused on earthquakes. Lately both groups started to cooperate by setting up a bilateral agreement. As one of the major problems is the lack of training, these groups try to cover this important gap by establishing training camps or executing regular drills in coordination with state agencies. Despite their short history volunteer groups are highly valued by the municipalities' civil protection officials. Working through a LIFE+ project on "Local Authorities Alliance for Forest Fire Prevention - LIFE08/ENV/GR/000553 " which is implemented with the contribution of the LIFE financial instrument of the European Community, we conducted the largest questionnaire survey in Greece regarding Civil Protection issues, among the municipalities of Greece. Overall 36% (117/325) of the country municipalities responded (heads of civil protection offices), offering an adequate statistical sample. Results showed that in 66% of the municipalities, volunteers get involved in forest fire prevention actions. From these municipalities 67.5% evaluate the volunteers' involvement as necessary, 27.5% as supportive (subsidiary) and 5% support that their involvement is not substantial. However, only 41,5% replied that they keep registry of each voluntary organization, regarding its capabilities, availability and equipment, whereas 42.5% support that a

  13. United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

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

    1991-06-01

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

  14. National Suicide Registry Malaysia (NSRM).

    Science.gov (United States)

    Hayati, A N; Kamarul, A K

    2008-09-01

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

  15. Volunteering as a Pathway to Productive and Social Engagement among Older Adults

    Science.gov (United States)

    Morrow-Howell, Nancy; Lee, Yung Soo; McCrary, Stacey; McBride, Amanda

    2014-01-01

    Introduction: Research on outcomes of volunteering in later life largely focuses on the health of volunteers. This is in contrast to studies of youth, where attention is directed toward the effects of volunteering on subsequent productive and citizen behaviors. In this study, we examined the effects of volunteering on subsequent social and civic…

  16. Widely Assumed but Thinly Tested: Do Employee Volunteers' Self-Reported Skill Improvements Reflect the Nature of Their Volunteering Experiences?

    Science.gov (United States)

    Jones, David A.

    2016-01-01

    -related skills on all 10 skills as hypothesized. I discuss the implications of these findings for theory and research, and provide suggestions for designing volunteer experiences that encourage service commitments from companies and their employees, and ultimately create tangible value for them and meaningful social value for their communities. PMID:27148108

  17. Widely Assumed but Thinly Tested: Do Employee Volunteers' Self-Reported Skill Improvements Reflect the Nature of Their Volunteering Experiences?

    Science.gov (United States)

    Jones, David A

    2016-01-01

    -related skills on all 10 skills as hypothesized. I discuss the implications of these findings for theory and research, and provide suggestions for designing volunteer experiences that encourage service commitments from companies and their employees, and ultimately create tangible value for them and meaningful social value for their communities.

  18. Enhancing Leadership Skills in Volunteers

    Science.gov (United States)

    Lockett, Landry L.; Boyd, Barry

    2012-01-01

    This article describes how professionals leading volunteers can purposefully work toward developing the "leadership identity" of individual volunteers. These concepts and the application of them are presented in the context of Cooperative Extension volunteer groups. Specific methods of developing the leadership identity and capacity of individual…

  19. Amplifying Student Learning through Volunteering

    Science.gov (United States)

    McFadden, Amanda; Smeaton, Kathleen

    2017-01-01

    Student volunteer experiences are ubiquitous within higher education contexts. Despite this, there is further scope for understanding the qualitatively different ways students experience volunteering. To achieve this an explicit focus on understanding volunteer experiences from the students' perspective and the relationship these experiences have…

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

    Science.gov (United States)

    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

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

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

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

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

    Science.gov (United States)

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

    2013-01-01

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

  3. REMOTE REGISTRY EDITOR

    Directory of Open Access Journals (Sweden)

    Bambang Kelana Simpony

    2016-03-01

    Full Text Available Abstract - Permissions setting on a computer is necessary. This is an effort that is not easy to change the system configuration or settings changed by the user. With a network of computers, of course, permissions setting do not need to be done one by one manually. Because in a computer network course there are many collection of computers connected together. Permissions setting so that the system can use the client-server applications that access restrictions can be done effectively. As the implementation of client-server applications can be created using Visual Basic 6.0. This language has been able to access the socket on the Windows operating system, named Winsock API that supports TCP / IP. This protocol is widely used because of the reliability of client-server application programming. The application is divided into two main applications, namely the client and server program name with the name of the Receiver Sender program. Receiver function receives instructions restriction of access rights Sender and send reports to the Sender process execution. While Sender function to send instructions restrictions permissions via the Registry to the Receiver. And after the test, the application can block important features available in the Windows operating system. So it is expected that these applications can help in permissions setting on a computer network. Keywords: Registry, Winsock API, TCP/IP, Socket, Protocol, Networking Abstrak - Pengaturan hak akses di suatu komputer sangat diperlukan. Hal ini merupakan salah satu upaya agar konfigurasi sistem tidak mudah dirubah atau diganti pengaturannya oleh pengguna. Dengan adanya jaringan komputer, tentunya pengaturan hak akses tidak perlu dilakukan satu-satu secara manual. Karena dalam suatu jaringan komputer pastinya terdapat banyak kumpulan komputer yang saling terhubung. Sehingga pengaturan hak akses bisa menggunakan sistem aplikasi client-server agar pembatasan hak akses bisa dilakukan dengan

  4. Establishing an institutional therapeutic apheresis registry.

    Science.gov (United States)

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

    2016-12-01

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

  5. Religiosity and Volunteering Intention among Undergraduate Malaysian Muslim Students

    Directory of Open Access Journals (Sweden)

    Ali Sallam Abdullah AbdulElah

    2018-01-01

    Full Text Available This paper deals with the question: To what extent do religiosity characteristics, contribute to the influence of volunteering intention among Malaysian Muslim students during disasters? To answer this research question, we focused the students in public universities. The finding concerns found that religiosity increases the likelihood of volunteering intention, implying that religious affiliation of youth increases the likelihood of volunteering. This is in line with previous research, that religious attendance is related positively to volunteering. These results confirm the idea that support of the religious attributes community plays quite a large role in volunteering process.. However, it a bear that volunteering is not only dependent on religious community, but also on individual motivation.

  6. Religiosity and Volunteering Intention Among Undergraduate Malaysian Muslim Students

    Directory of Open Access Journals (Sweden)

    Sallam A.A.A.

    2018-01-01

    Full Text Available This paper deals with the question: To what extent do religiosity characteristics, contribute to the influence of volunteering intention among Malaysian Muslim students during disasters? To answer this research question, we focused the students in public universities. The finding concerns found that religiosity increases the likelihood of volunteering intention, implying that religious affiliation of youth increases the likelihood of volunteering. This is in line with previous research, that religious attendance is related positively to volunteering. These results confirm the idea that support of the religious attributes community plays quite a large role in volunteering process. However, it a bear that volunteering is not only dependent on religious community, but also on individual motivation.

  7. Making room for volunteers

    DEFF Research Database (Denmark)

    Nielsen, Rasmus Kleis

    2012-01-01

    If campaigns do not accommodate this view, all but a hard core of regulars and fired-up partisans will drift away, leaving it for staffers and hired hands to do all the hard work of identifying voters, canvassing people by foot and by phone, and turning out the vote. [...] ironically, a campaign...... that is singleminded in its instrumental pursuit of victory can thus be less effective than one that is more accommodating- a campaign that makes room for volunteers by accepting that, unlike staffers, they come to politics with a different perspective and conception of what is and ought to be going on....

  8. Chinese SLE Treatment and Research Group Registry: III. Association of Autoantibodies with Clinical Manifestations in Chinese Patients with Systemic Lupus Erythematosus

    Directory of Open Access Journals (Sweden)

    Jing Li

    2014-01-01

    Full Text Available We investigated the characteristics of Chinese SLE patients by analyzing the association between specific autoantibodies and clinical manifestations of 2104 SLE patients from registry data of CSTAR cohort. Significant (P<0.05 associations were found between anti-Sm antibody, anti-rRNP antibody, and malar rash; between anti-RNP antibody, anti-SSA antibody, and pulmonary arterial hypertension (PAH; between anti-SSB antibody and hematologic involvement; and between anti-dsDNA antibody and nephropathy. APL antibody was associated with hematologic involvement, interstitial lung disease, and a lower prevalence of oral ulcerations (P<0.05. Associations were also found between anti-dsDNA antibody and a lower prevalence of photosensitivity, and between anti-SSA antibody and a lower prevalence of nephropathy (P<0.05. Most of these findings were consistent with other studies in the literature but this study is the first report on the association between anti-SSA and a lower prevalence of nephropathy. The correlations of specific autoantibodies and clinical manifestations could provide clues for physicians to predict organ damages in SLE patients. We suggest that a thorough screening of autoantibodies should be carried out when the diagnosis of SLE is established, and repeated echocardiography annually in SLE patients with anti-RNP or anti-SSA antibody should be performed.

  9. Challenges in volunteering from cancer care volunteers perspectives.

    Science.gov (United States)

    Kamaludin, Kauthar Mohamad; Muhammad, Mazanah; Wahat, Nor Wahiza Abdul; Ibrahim, Rahimah

    2013-01-01

    The involvement of non-government organizations (NGOs) and support groups has helped strengthen public health services in addressing cancer care burden. Owing to the contribution of volunteers in cancer care, this article documents a qualitative study that examined challenges in attracting and retaining cancer care volunteers as part of the effort to develop a volunteer recruitment model. Data were collected through three focus group discussions involving 19 cancer support group members in Malaysia. Findings of the study revealed that mobility and locality appeared to be significant in Malaysian context, while the need for financial support and time flexibility are challenges faced by cancer support groups to attract and retain volunteers. The findings imply that cancer care initiatives can benefit from more local volunteers but at the same time these volunteers require flexibility and financial support to sustain their engagement.

  10. Volunteer Work, Religious Commitment, and Resting Pulse Rates.

    Science.gov (United States)

    Krause, Neal; Ironson, Gail; Hill, Peter C

    2017-04-01

    Research indicates that greater involvement in volunteer activities is associated with better health. We aim to contribute to this literature in two ways. First, rather than rely on self-reports of health, measured resting pulse rates serve as the dependent variable. Second, an effort is made to see if religious commitment moderates the relationship between volunteering and resting pulse rates. Data that come from a recent nationwide survey (N = 2265) suggest that volunteer work is associated with lower resting pulse rates. The results also reveal that the relationship between engaging in volunteer work and resting pulse rates improves among study participants who are more deeply committed to religion.

  11. Pseudonyms for cancer registries.

    Science.gov (United States)

    Pommerening, K; Miller, M; Schmidtmann, I; Michaelis, J

    1996-06-01

    In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

  12. The relationship between confidence in charitable organizations and volunteering revisited

    NARCIS (Netherlands)

    Bekkers, René H.F.P.; Bowman, Woods

    2009-01-01

    Confidence in charitable organizations (charitable confidence) would seem to be an important prerequisite for philanthropic behavior. Previous research relying on cross-sectional data has suggested that volunteering promotes charitable confidence and vice versa. This research note, using new

  13. Wasted Resources: Volunteers and Disasters

    Science.gov (United States)

    2009-12-01

    too much in regards to volunteering. The study, conducted in Australia , attempted to assess the “nonlinear association of volunteering and well...medical studies have started to show a negative psychological impact of volunteering too much. Dr. Tim Windsor, of Australian National University...donated goods.  Makes store merchandise available to disaster victims. Operates retail stores, homeless shelters, and feeding facilities that are

  14. Why do rape survivors volunteer for face-to-face interviews? A meta-study of victims' reasons for and concerns about research participation.

    Science.gov (United States)

    Campbell, Rebecca; Adams, Adrienne E

    2009-03-01

    There is growing interest in understanding how different research methods are perceived by victims of violence and what survivors will reveal to researchers (termed meta-research or meta-studies). The purpose of this project was to conduct a qualitative meta-study on why rape survivors chose to participate in community-based, face-to-face interviews. Participants mentioned four primary reasons for why they decided to participate in this study: (a) to help other survivors, (b) to help themselves, (c) to support research on rape/sexual assault, and (d) to receive financial compensation. Implications for designing research recruitment protocols are discussed.

  15. Retired RNs: perceptions of volunteering.

    Science.gov (United States)

    Cocca-Bates, Katherine C; Neal-Boylan, Leslie

    2011-01-01

    A qualitative study was done to explore the perceptions of volunteering among retired registered nurses (RNs) in Kansas. Participants were volunteers in formal nursing roles or were using their nursing knowledge and experience in non-nursing roles, such as church work. Regardless of the type of volunteer position, retired RNs reported that they use what they have learned as nurses when they volunteer. Volunteering benefits include enhanced self-worth, intellectual stimulation, reduced social isolation, and opportunities to help others. Increased paperwork, new technology, difficulty finding nursing-specific volunteer opportunities, resistance from health care organizations, and a lack of respect for what these nurses know are challenges and barriers to volunteering. Retired RNs have accumulated years of clinical nursing experience and can be helpful to employed nurses. Health care organizations should launch targeted efforts to recruit and utilize retired RN volunteers. Health care professionals who care for older adults should recommend volunteering as a healthful endeavor. Copyright © 2011 Mosby, Inc. All rights reserved.

  16. Can volunteering in later life reduce the risk of dementia? A 5-year longitudinal study among volunteering and non-volunteering retired seniors.

    Science.gov (United States)

    Griep, Yannick; Hanson, Linda Magnusson; Vantilborgh, Tim; Janssens, Laurens; Jones, Samantha K; Hyde, Martin

    2017-01-01

    We propose that voluntary work, characterized by social, physical and cognitive activity in later life is associated with fewer cognitive problems and lower dementia rates. We test these assumptions using 3-wave, self-reported, and registry data from the 2010, 2012, and 2014 Swedish National Prescribed Drug Register. We had three groups of seniors in our data: 1) no volunteering (N = 531), 2) discontinuous volunteering (N = 220), and 3) continuous volunteering (N = 250). We conducted a path analysis in Mplus to investigate the effect of voluntary work (discontinuously and continuously) on self-reported cognitive complaints and the likelihood of being prescribed an anti-dementia treatment after controlling for baseline and relevant background variables. Our results indicated that seniors, who continuously volunteered, reported a decrease in their cognitive complaints over time, whereas no such associations were found for the other groups. In addition, they were 2.44 (95%CI [1.86; 3.21]) and 2.46 (95%CI [1,89; 3.24]) times less likely to be prescribed an anti-dementia treatment in 2012 and 2014, respectively. Our results largely support the assumptions that voluntary work in later life is associated with lower self-reported cognitive complaints and a lower risk for dementia, relative to those who do not engage, or only engage episodically in voluntary work.

  17. Can volunteering in later life reduce the risk of dementia? A 5-year longitudinal study among volunteering and non-volunteering retired seniors.

    Directory of Open Access Journals (Sweden)

    Yannick Griep

    Full Text Available We propose that voluntary work, characterized by social, physical and cognitive activity in later life is associated with fewer cognitive problems and lower dementia rates. We test these assumptions using 3-wave, self-reported, and registry data from the 2010, 2012, and 2014 Swedish National Prescribed Drug Register. We had three groups of seniors in our data: 1 no volunteering (N = 531, 2 discontinuous volunteering (N = 220, and 3 continuous volunteering (N = 250. We conducted a path analysis in Mplus to investigate the effect of voluntary work (discontinuously and continuously on self-reported cognitive complaints and the likelihood of being prescribed an anti-dementia treatment after controlling for baseline and relevant background variables. Our results indicated that seniors, who continuously volunteered, reported a decrease in their cognitive complaints over time, whereas no such associations were found for the other groups. In addition, they were 2.44 (95%CI [1.86; 3.21] and 2.46 (95%CI [1,89; 3.24] times less likely to be prescribed an anti-dementia treatment in 2012 and 2014, respectively. Our results largely support the assumptions that voluntary work in later life is associated with lower self-reported cognitive complaints and a lower risk for dementia, relative to those who do not engage, or only engage episodically in voluntary work.

  18. [Research on differentially expressed genes related to substance and energy metabolism between healthy volunteers and splenasthenic syndrome patients with chronic superficial gastritis].

    Science.gov (United States)

    Ze-Min, Yang; Wei-Wen, Chen; Ying-Fang, Wang

    2013-02-01

    To analyze the metabolic states of the lipids, protein, carbohydrate, and nucleic acid for chronic superficial gastritis patients of splenasthenic syndrome (SS), and to explore the pathogenesis mechanism of SS based on substance and energy metabolisms. During June 2004 to March 2005, recruited were four chronic superficial gastritis patients of SS who visited at the First Hospital of Guangzhou University of Chinese Medicine and Guangdong Provincial Hospital of Traditional Chinese Medicine. Four healthy volunteers were recruited from Guangzhou University of Chinese Medicine. Their gastric mucosa was extracted to perform experiments of DNA microarray. The dual-channel DNA microarray data were mined and bioinformatics analyzed by BRB ArrayTools and IPA software. Fifteen genes were involved in substance and energy metabolisms in 20 differentially expressed genes, accounting for 75%.Among these genes, one gene was up-regulated, 14 genes down-regulated, and 11 genes were enzyme gene. Differentially expressed genes related to lipid metabolism included ACAA2 and CYP20A1, manifested as fatty acid catabolism and cholesterol transformation. Genes related to protein metabolism included ALDH9A1, ASL, ASS1, PCY-OX1L, RPS28, UBE2D2, UBXN1, B3GNT1, GCNT1, and PPP1R3C, manifested as decreased amino acid metabolism that may affect the biologic processes such as autonomic nerve, urea cycle, etc., reduced protein synthesis, increased ubiquitination of fault fold proteins, and decreased post-translated modification of glycosylation and dephosphorylation. Genes related to carbohydrate metabolism included PPP1R3C, B3GNT1, and GCNT1, manifested as decreased glycogen and glycan syntheses. Genes related to nucleic acid metabolism included RMI1, SMARCD3, and PARP1, manifested as degraded DNA duplication and transcription, and increased DNA damage repair. The metabolisms of the lipids, protein, carbohydrate, and nucleic acid in chronic superficial gastritis patients of SS obviously decreased

  19. Volunteering in the aftermath of disasters: Psychopathology and volunteer management

    NARCIS (Netherlands)

    Þormar, S.B.

    2015-01-01

    The numbers of disasters in the world have multiplied in recent years. The same goes for community volunteers that respond to these events. In developing countries community volunteers are often the largest resource available in the first 48 hours until a more skilled team of rescuers arrives.

  20. An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development.

    Science.gov (United States)

    Kourime, M; Bryce, J; Jiang, J; Nixon, R; Rodie, M; Ahmed, S F

    2017-03-20

    With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses. The design and operational aspects of the registries were evaluated against published quality indicators. Additional criteria included the level of activity, international acceptability of the registries and their use for research. The design of the I-DSD and I-CAH Registries provides them with the ability to perform multiple studies and meet the standards for data elements, data sources and eligibility criteria. The registries follow the standards for data security, governance, ethical and legal issues, sustainability and communication of activities. The data have a high degree of validity, consistency and accuracy and the completeness is maximal for specific conditions such as androgen insensitivity syndrome and congenital adrenal hyperplasia. In terms of research output, the external validity is strong but the wide variety of cases needs further review. The internal validity of data was condition specific and highest for conditions such as congenital adrenal hyperplasia. The shift of the registry from a European registry to an international registry and the creation of a discrete but linked CAH registry increased the number of users and stakeholders as well as the international acceptability of both registries. The I-DSD and I-CAH registries comply with the standards set by expert organisations. Recent modifications in their operation have allowed the registries to increase their user acceptability.

  1. Volunteered Cloud Computing for Disaster Management

    Science.gov (United States)

    Evans, J. D.; Hao, W.; Chettri, S. R.

    2014-12-01

    Disaster management relies increasingly on interpreting earth observations and running numerical models; which require significant computing capacity - usually on short notice and at irregular intervals. Peak computing demand during event detection, hazard assessment, or incident response may exceed agency budgets; however some of it can be met through volunteered computing, which distributes subtasks to participating computers via the Internet. This approach has enabled large projects in mathematics, basic science, and climate research to harness the slack computing capacity of thousands of desktop computers. This capacity is likely to diminish as desktops give way to battery-powered mobile devices (laptops, smartphones, tablets) in the consumer market; but as cloud computing becomes commonplace, it may offer significant slack capacity -- if its users are given an easy, trustworthy mechanism for participating. Such a "volunteered cloud computing" mechanism would also offer several advantages over traditional volunteered computing: tasks distributed within a cloud have fewer bandwidth limitations; granular billing mechanisms allow small slices of "interstitial" computing at no marginal cost; and virtual storage volumes allow in-depth, reversible machine reconfiguration. Volunteered cloud computing is especially suitable for "embarrassingly parallel" tasks, including ones requiring large data volumes: examples in disaster management include near-real-time image interpretation, pattern / trend detection, or large model ensembles. In the context of a major disaster, we estimate that cloud users (if suitably informed) might volunteer hundreds to thousands of CPU cores across a large provider such as Amazon Web Services. To explore this potential, we are building a volunteered cloud computing platform and targeting it to a disaster management context. Using a lightweight, fault-tolerant network protocol, this platform helps cloud users join parallel computing projects

  2. Race differences in the relationship between formal volunteering and hypertension.

    Science.gov (United States)

    Tavares, Jane L; Burr, Jeffrey A; Mutchler, Jan E

    2013-03-01

    This study investigated race differences in the relationship between formal volunteering and hypertension prevalence among middle-aged and older adults. Using data from the 2004 and 2006 Health and Retirement Study (N = 5,666; 677 African Americans and 4,989 whites), we examined regression models stratified by race to estimate relationships among hypertension prevalence, systolic and diastolic blood pressure, and volunteer status and hours spent volunteering among persons aged 51 years old and older. White volunteers had a lower risk of hypertension than white nonvolunteers. A threshold effect was also present; compared with nonvolunteers, volunteering a moderate number of hours was associated with lowest risk of hypertension for whites. Results for hypertension were consistent with results from alternative models of systolic and diastolic blood pressure. We found no statistically significant relationship between volunteering activity and hypertension/blood pressure for African Americans. There may be unmeasured cultural differences related to the meaning of volunteering and contextual differences in volunteering that account for the race differences we observed. Research is needed to determine the pathways through which volunteering is related to hypertension risk and that may help explain race differences identified here.

  3. Grandparenting Roles and Volunteer Activity.

    Science.gov (United States)

    Bulanda, Jennifer Roebuck; Jendrek, Margaret Platt

    2016-01-01

    We examine whether grandparenting roles are related to formal volunteering among older adults. Logistic regression is used to examine the likelihood of volunteering based on grandchild care using data from the 2004 wave of the Health and Retirement Study (n = 13,785). Longitudinal analyses utilize treatment effects models to examine changes in volunteering for grandparents who begin nonresidential grandchild care between the 2004 and 2008 waves (n = 10,811). Results show that grandparents raising coresidential grandchildren have lower odds of volunteering than grandparents providing no regular grandchild care. However, grandparents who provide nonresidential grandchild care are more likely to volunteer than grandparents not providing grandchild care and those raising a coresidential grandchild. Grandparents who provide nonresidential care for grandchildren engage in more volunteering before assuming grandchild care, and their volunteerism increases after becoming a caregiver for a grandchild. Consistent with resource theory and the accumulation of roles, providing nonresidential grandchild care may draw grandparents into formal volunteer activity. The lower human capital resources evidenced by grandparents raising coresidential grandchildren may play a role in their lower likelihood of formal volunteering. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  4. Volunteer Computing for Science Gateways

    OpenAIRE

    Anderson, David

    2017-01-01

    This poster offers information about volunteer computing for science gateways that offer high-throughput computing services. Volunteer computing can be used to get computing power. This increases the visibility of the gateway to the general public as well as increasing computing capacity at little cost.

  5. Conflict of interest disclosure in biomedical research: A review of current practices, biases, and the role of public registries in improving transparency

    OpenAIRE

    Dunn, Adam G.; Coiera, Enrico; Mandl, Kenneth D.; Bourgeois, Florence T.

    2016-01-01

    Conflicts of interest held by researchers remain a focus of attention in clinical research. Biases related to these relationships have the potential to directly impact the quality of healthcare by influencing decision-making, yet conflicts of interest remain under-reported, inconsistently described, and difficult to access. Initiatives aimed at improving the disclosure of researcher conflicts of interest are still in their infancy but represent a vital reform that must be addressed before pot...

  6. Conditions and need of creation of Club of sports volunteering

    Directory of Open Access Journals (Sweden)

    Iryna Petrenko

    2016-12-01

    Full Text Available Purpose: the identification of prerequisites of creation of Club of sports volunteering. Material & Methods: 250 residents of Kharkiv participated in the research. The analysis of references and documents, poll (questioning, methods of mathematical data processing were used. Results: the social need for training of sport volunteers is defined on the basis of the data obtained as a result of the poll. The project of public organization «Club of sport volunteers» is developed. Conclusions: the results of the research demonstrate that there is need for creation of the permanent organization for training of sport volunteers today. The creation of public organization «Club of sports volunteering» will give the chance orderly and systematically to carry out training of sport volunteers thanks to the development and deployment of the permanent program of preparation, will promote the expansion of knowledge and experience of sports volunteer activity due to application and their fixing in practice, development and support of the sports volunteer movement.

  7. The national dose registry of Canada

    International Nuclear Information System (INIS)

    1982-04-01

    In 1951, when the National Dosimetry Service was established by the Department of National Health and Welfare, a system of centralized records was created as an integral part of the new service. Over the last few years the dose record system has expanded in size and content, and improvements have been made in the physical methods of record storage. In addition to the 250 000 individual dose records from the National Dosimetry Service, the National Dose Registry now includes internal tritium and external doses from nuclear generating stations, and radon daughter exposures submitted by uranium mining companies. With the increase in the use of radiation in the medical, industrial and research fields, it is becoming more important to have a comprehensive and readily accessible centralized record system. The Canadian National Dose Registry is particularly suited for continuing health risk studies of radiation workers and provides a base for future epidemiological studies

  8. Personalized genomic disease risk of volunteers.

    Science.gov (United States)

    Gonzalez-Garay, Manuel L; McGuire, Amy L; Pereira, Stacey; Caskey, C Thomas

    2013-10-15

    Next-generation sequencing (NGS) is commonly used for researching the causes of genetic disorders. However, its usefulness in clinical practice for medical diagnosis is in early development. In this report, we demonstrate the value of NGS for genetic risk assessment and evaluate the limitations and barriers for the adoption of this technology into medical practice. We performed whole exome sequencing (WES) on 81 volunteers, and for each volunteer, we requested personal medical histories, constructed a three-generation pedigree, and required their participation in a comprehensive educational program. We limited our clinical reporting to disease risks based on only rare damaging mutations and known pathogenic variations in genes previously reported to be associated with human disorders. We identified 271 recessive risk alleles (214 genes), 126 dominant risk alleles (101 genes), and 3 X-recessive risk alleles (3 genes). We linked personal disease histories with causative disease genes in 18 volunteers. Furthermore, by incorporating family histories into our genetic analyses, we identified an additional five heritable diseases. Traditional genetic counseling and disease education were provided in verbal and written reports to all volunteers. Our report demonstrates that when genome results are carefully interpreted and integrated with an individual's medical records and pedigree data, NGS is a valuable diagnostic tool for genetic disease risk.

  9. Evaluating the use and limitations of the Danish National Hospital Register in registry-based research using an example of multiple sclerosis

    DEFF Research Database (Denmark)

    Mason, K; Thygesen, Lau Caspar; Stenager, Egon

    2012-01-01

    BACKGROUND: The Danish National Patient Register, Landspatientregistret (LPR), is a register of all hospital discharges and outpatient treatments in Denmark. AIMS: It is increasingly used in research so it is important to understand to what extent this can be used as an accurate source of informa......BACKGROUND: The Danish National Patient Register, Landspatientregistret (LPR), is a register of all hospital discharges and outpatient treatments in Denmark. AIMS: It is increasingly used in research so it is important to understand to what extent this can be used as an accurate source...... in epidemiological MS research, in particular incidence studies. The study also found that the completeness of the LPR could be increased to 92.8% by including LPR records from other departments in addition, but this reduced the validity of the LPR to 95.1%. However, these results cannot uncritically be applied...

  10. Volunteer Program for the WSIS

    CERN Multimedia

    2003-01-01

    PALEXPO, GENEVA, from 4 - 13 December Are you concerned by the digital divide between the North and the South? Would you like to contribute personally to the success of the World Summit on the Information Society (WSIS), in particular the activities of civil society? Join the team of volunteers and/or offer accommodation to an international volunteer! Contact: Charlotte (Project Coordinator WSIS) Kathy (Volunteer Coordinator) ICVolunteers PO Box 755 - CH-1211 Genève 4 Phone: +41 22 800 1436 - Fax: +41 22 800 14 37 E-mail: charlotte@icvolunteers.org kathy@icvolunteers.org For further information, please consult the website: http://www.icvolunteers.org

  11. "Do-It-Ourselves Science": Case Studies of Volunteer-Initiated Citizen Science Involvement

    Science.gov (United States)

    Raddick, Jordan; Bracey, G.; Gay, P. L.

    2009-05-01

    Galaxy Zoo is a citizen science website in which members of the public volunteer to classify galaxies, thereby helping astronomers conduct publishable research into galaxy morphologies and environments. Although the site was originally created to answer a few specific questions, some members of the community - both scientists and volunteers - have spontaneously developed an interest in a wider variety of questions. Volunteers have pursued answers to these questions with guidance from professional astronomers; in completing these projects, volunteers have independently used some of the same data viewing and analysis tools that professional astronomers use, and have even developed their own online tools. They have created their own research questions and their own plans for data analysis, and are planning to write scientific papers with the results to be submitted to peer-reviewed scientific journals. Volunteers have identified a number of such projects. These volunteer-initiated projects have extended the scientific reach of Galaxy Zoo, while also giving volunteers first-hand experience with the process of science. We are interested in the process by which volunteers become interested in volunteer-initiated projects, and what tasks they participate in, both initially and as their involvement increases. What motivates a volunteer to become involved in a volunteer-initiated project? How does his or her motivation change with further involvement? We are conducting a program of qualitative education research into these questions, using as data sources the posts that volunteers have made to the Galaxy Zoo forum and transcripts of interviews with volunteers.

  12. Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease

    NARCIS (Netherlands)

    Veldhuijzen van Zanten, Sophie E. M.; Baugh, Joshua; Chaney, Brooklyn; de Jongh, Dennis; Sanchez Aliaga, Esther; Barkhof, Frederik; Noltes, Johan; de Wolf, Ruben; van Dijk, Jet; Cannarozzo, Antonio; Damen-Korbijn, Carin M.; Lieverst, Jan A.; Colditz, Niclas; Hoffmann, Marion; Warmuth-Metz, Monika; Bison, Brigitte; Jones, David T. W.; Sturm, Dominik; Gielen, Gerrit H.; Jones, Chris; Hulleman, Esther; Calmon, Raphael; Castel, David; Varlet, Pascale; Giraud, Géraldine; Slavc, Irene; van Gool, Stefaan; Jacobs, Sandra; Jadrijevic-Cvrlje, Filip; Sumerauer, David; Nysom, Karsten; Pentikainen, Virve; Kivivuori, Sanna-Maria; Leblond, Pierre; Entz-Werle, Natasha; von Bueren, Andre O.; Kattamis, Antonis; Hargrave, Darren R.; Hauser, Péter; Garami, Miklos; Thorarinsdottir, Halldora K.; Pears, Jane; Gandola, Lorenza; Rutkauskiene, Giedre; Janssens, Geert O.; Torsvik, Ingrid K.; Perek-Polnik, Marta; Gil-da-Costa, Maria J.; Zheludkova, Olga; Shats, Liudmila; Deak, Ladislav; Kitanovski, Lidija; Cruz, Ofelia; Morales La Madrid, Andres; Holm, Stefan; Gerber, Nicolas; Kebudi, Rejin; Grundy, Richard; Lopez-Aguilar, Enrique; Zapata-Tarres, Marta; Emmerik, John; Hayden, Tim; Bailey, Simon; Biassoni, Veronica; Massimino, Maura; Grill, Jacques; Vandertop, William P.; Kaspers, Gertjan J. L.; Fouladi, Maryam; Kramm, Christof M.; van Vuurden, Dannis G.

    2017-01-01

    Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research,

  13. Development of the SIOPE DIPG network, registry and imaging repository : a collaborative effort to optimize research into a rare and lethal disease

    NARCIS (Netherlands)

    van Zanten, Sophie E M Veldhuijzen; Baugh, Joshua; Chaney, Brooklyn; De Jongh, Dennis; Aliaga, Esther Sanchez; Barkhof, Frederik; Noltes, Johan; De Wolf, Ruben; Van Dijk, Jet; Cannarozzo, Antonio; Damen-Korbijn, Carin M; Lieverst, Jan A; Colditz, Niclas; Hoffmann, Marion; Warmuth-Metz, Monika; Bison, Brigitte; Jones, David T W; Sturm, Dominik; Gielen, Gerrit H; Jones, Chris; Hulleman, Esther; Calmon, Raphael; Castel, David; Varlet, Pascale; Giraud, Géraldine; Slavc, Irene; Van Gool, Stefaan; Jacobs, Sandra; Jadrijevic-Cvrlje, Filip; Sumerauer, David; Nysom, Karsten; Pentikainen, Virve; Kivivuori, Sanna-Maria; Leblond, Pierre; Entz-Werle, Natasha; von Bueren, Andre O; Kattamis, Antonis; Hargrave, Darren R; Hauser, Péter; Garami, Miklos; Thorarinsdottir, Halldora K; Pears, Jane; Gandola, Lorenza; Rutkauskiene, Giedre; Janssens, Geert O; Torsvik, Ingrid K; Perek-Polnik, Marta; Gil-da-Costa, Maria J; Zheludkova, Olga; Shats, Liudmila; Deak, Ladislav; Kitanovski, Lidija; Cruz, Ofelia; La Madrid, Andres Morales; Holm, Stefan; Gerber, Nicolas; Kebudi, Rejin; Grundy, Richard; Lopez-Aguilar, Enrique; Zapata-Tarres, Marta; Emmerik, John; Hayden, Tim; Bailey, Simon; Biassoni, Veronica; Massimino, Maura; Grill, Jacques; Vandertop, William P; Kaspers, Gertjan J L; Fouladi, Maryam; Kramm, Christof M; van Vuurden, Dannis G

    2017-01-01

    Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research,

  14. Municipality and Neighborhood Influences on Volunteering in Later Life.

    Science.gov (United States)

    Dury, Sarah; Willems, Jurgen; De Witte, Nico; De Donder, Liesbeth; Buffel, Tine; Verté, Dominique

    2016-06-01

    This article explores the relationships between municipality features and volunteering by older adults. In the literature, strong evidence exists of the influence of place on older people's health. However, the question how neighborhoods and municipalities promote or hinder volunteer participation remains under-explored. Data for the research are derived from the Belgian Aging Studies. We estimate logistic multilevel models for older individuals' engagement in volunteering across 141 municipalities in Belgium (N = 67,144). Analysis shows that neighborhood connectedness, neighborhood satisfaction, home ownership, and presence of services predict voluntary engagement at older ages. The findings support that perceptions and quality of social resources that relate to neighborhoods may be important factors to explain volunteering among older adults. Moreover, the findings suggest that volunteering in later life must be considered within a broader framework. © The Author(s) 2014.

  15. Monitoring and Evaluation Practices of Volunteer Tourism Organisations

    DEFF Research Database (Denmark)

    Steele, Jessica; Dredge, Dianne; Scherrer, Pascal

    2017-01-01

    , volunteer tourism organisations actually monitor and evaluate their programmes. The aim of this paper is to identify and critically examine the extent to which volunteer tourism organisations engage with the monitoring and evaluation of their projects. Based on a survey of 80 organisations and qualitative...... interviews with representatives from 29 organisations, the research found that monitoring and evaluation practices vary greatly. Participants readily accept a lack of time and resources as barriers to monitoring an evaluation, there is an assumption that any volunteer-host community interaction is positive......, and despite voluntary guidelines there is little incentive to prioritise monitoring and evaluation of volunteer programmes. A small number of volunteer organisations emerged as an exception to this overall pattern and are discussed. Discrepancies between stated importance of monitoring and evaluation...

  16. Volunteer Clouds and Citizen Cyberscience for LHC Physics

    Science.gov (United States)

    Aguado Sanchez, Carlos; Blomer, Jakob; Buncic, Predrag; Chen, Gang; Ellis, John; Garcia Quintas, David; Harutyunyan, Artem; Grey, Francois; Lombrana Gonzalez, Daniel; Marquina, Miguel; Mato, Pere; Rantala, Jarno; Schulz, Holger; Segal, Ben; Sharma, Archana; Skands, Peter; Weir, David; Wu, Jie; Wu, Wenjing; Yadav, Rohit

    2011-12-01

    Computing for the LHC, and for HEP more generally, is traditionally viewed as requiring specialized infrastructure and software environments, and therefore not compatible with the recent trend in "volunteer computing", where volunteers supply free processing time on ordinary PCs and laptops via standard Internet connections. In this paper, we demonstrate that with the use of virtual machine technology, at least some standard LHC computing tasks can be tackled with volunteer computing resources. Specifically, by presenting volunteer computing resources to HEP scientists as a "volunteer cloud", essentially identical to a Grid or dedicated cluster from a job submission perspective, LHC simulations can be processed effectively. This article outlines both the technical steps required for such a solution and the implications for LHC computing as well as for LHC public outreach and for participation by scientists from developing regions in LHC research.

  17. Review of patient registries in dermatology.

    Science.gov (United States)

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

    2016-10-01

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

  18. Virtual Mentoring for Volunteer Leadership Development

    OpenAIRE

    Guloy, Sheryl

    2015-01-01

    Calls to investigate leadership development in the nonprofit and voluntary sector have been put forth as concerns about leadership succession have increased. To respond to this call to investigate this under-researched area, this design-based, multiple case study provides rich, thick descriptions of the development of the mentoring relationships, between mentor and mentee pairs, over the course of a virtual mentoring program for volunteer leadership development, in a Catholic nonprofit. I exp...

  19. Volunteer Monitoring to Protect Wetlands

    Science.gov (United States)

    The involvement of volunteers in ecological monitoring is a realistic, cost-effective, and beneficial way to obtain important information which might otherwise be unavailable due to lack of resources at government agencies.

  20. Trends Impacting Volunteer Administrators in the Next Ten Years.

    Science.gov (United States)

    Culp, Ken, III; Nolan, Mike

    2000-01-01

    A survey of 49 volunteer leadership development programs (39% response) and 704 professional association members (46% response) identified the top volunteer trends: virtual volunteering, corporate/workplace volunteers, episodic volunteering, and changing demographics of volunteers. (JOW)

  1. Volunteering in the Community: Potential Benefits for Cognitive Aging.

    Science.gov (United States)

    Guiney, Hayley; Machado, Liana

    2018-03-02

    This review aims to advance understanding of the potential benefits of volunteering in the community for older adults' cognitive functioning by taking an in-depth look at the relevant evidence to date. This review describes the main pathways through which volunteering could plausibly benefit cognitive functioning and critically examines research that has specifically investigated links between volunteering and cognition. Fifteen articles that assessed in adults aged ≥ 55 years the relationship between volunteering (predictor) and cognitive functioning (outcome) were identified via literature database searches. On balance, evidence from the small number of relevant studies to date supports the idea that volunteering can protect against cognitive aging with respect to global functioning and at least some specific cognitive domains. Studies that used robust designs and assessed domain-specific cognitive functioning produced the largest effect sizes. To help advance the field, this review puts forward recommendations for future research, with an emphasis on the need for robust study designs and specific investigations into the nature and extent of the cognitive benefits of volunteering. Through that work, researchers can determine how a simple and accessible activity like volunteering can best be used to help reduce the burden of age-related cognitive decline. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  2. Volunteers for Researchers’ Night wanted

    CERN Document Server

    Katarina Anthony

    2015-01-01

    Every year, on the last Friday of September, the European Researchers’ Night (see here) takes place in about 300 cities all over Europe - promoting research in engaging and fun ways for the general public. This year, CERN will be participating once again, hosting dozens of events across the Balexert shopping centre – and we’ll need YOUR help to make the celebration a success.   From film screenings and celebrity Q&A sessions to “Ask a Researcher” and build-your-own LEGO LHC events, this year’s Researchers’ Night is going to be jam-packed! The fun will kick off prior to the night itself with a mock-up of the LHC tunnel installed in the central court of the Balexert shopping centre, 8-12 September*. CERN people will be on hand to speak to shoppers about the LHC, and to encourage them to participate in Researchers’ Night! The CERN organisers are recruiting volunteers and support staff for Researchers’ ...

  3. Vocational guidance in social volunteering

    Directory of Open Access Journals (Sweden)

    Nikolay S. Pryazhnikov

    2017-03-01

    Full Text Available The paper discusses the possibilities and limitations of vocational guidance in the social volunteering system. The essence of volunteer work is closely related with assistance to desperate people in searching for the meaning of living, often coinciding with labour activity that are deemed in terms of “the main matter of life” and “the leading activity”. For adolescents, it is the choice of career, and for adults, it is the work proper (i.e. an essential condition for personal self-realization. The problem of “forced volunteering” for experts in vocational guidance also means that they often have to work voluntarily and unselfishly outside the official guidelines. To clarify the terms «volunteer» and «a person in desperate need of help» the study used the method of analyzing the documents, e.g. the Regulations on Social Volunteering, the generalization of psychological sources, the initial survey of university students as active supporters of the volunteer movement, On the essence of volunteering and the place of career guidance in selfless social work. Vocational guidance is not excluded from the general system of volunteerism, but has an insufficiently defined status and low popularity among participants in social volunteering. Also, the problem of «forced volunteering» of experts in career counseling, which often requires voluntary and unselfish performance of quality work outside the framework of official instructions, is also indicated. Simultaneously, positive aspects of such disinterested career initiatives are noted, in particular, less control by the official inspectors (or customers and, accordingly, greater freedom of creativity than when someone else does the work.

  4. Pain perception in healthy volunteers

    DEFF Research Database (Denmark)

    Janum, Susanne; Nielsen, Signe Tellerup; Werner, Mads U

    2016-01-01

    We aimed to study the relationship between pain perception and cytokine release during systemic inflammation. We present a randomized crossover trial in healthy volunteers (n = 17) in 37 individual trials. Systemic inflammation was induced by an i.v. bolus of Escherichia coli LPS (2 ng/kg) on two...... in healthy human volunteers leads to reduction in pain pressure threshold and an increase in pain perception to heat stimuli, supporting a relationship between acute systemic inflammation and pain perception....

  5. An international registry for primary ciliary dyskinesia.

    Science.gov (United States)

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

    2016-03-01

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

  6. The use of in vivo, ex vivo, in vitro, computational models and volunteer studies in vision research and therapy, and their contribution to the Three Rs.

    Science.gov (United States)

    Combes, Robert D; Shah, Atul B

    2016-07-01

    Much is known about mammalian vision, and considerable progress has been achieved in treating many vision disorders, especially those due to changes in the eye, by using various therapeutic methods, including stem cell and gene therapy. While cells and tissues from the main parts of the eye and the visual cortex (VC) can be maintained in culture, and many computer models exist, the current non-animal approaches are severely limiting in the study of visual perception and retinotopic imaging. Some of the early studies with cats and non-human primates (NHPs) are controversial for animal welfare reasons and are of questionable clinical relevance, particularly with respect to the treatment of amblyopia. More recently, the UK Home Office records have shown that attention is now more focused on rodents, especially the mouse. This is likely to be due to the perceived need for genetically-altered animals, rather than to knowledge of the similarities and differences of vision in cats, NHPs and rodents, and the fact that the same techniques can be used for all of the species. We discuss the advantages and limitations of animal and non-animal methods for vision research, and assess their relative contributions to basic knowledge and clinical practice, as well as outlining the opportunities they offer for implementing the principles of the Three Rs (Replacement, Reduction and Refinement). 2016 FRAME.

  7. Environmental and Conservation Volunteering as Workplace Integrated Learning for University Students

    Science.gov (United States)

    Scott, Rowena H.; van Etten, Eddie

    2013-01-01

    This research paper introduces the concept and practice of tertiary sciences students doing environmental volunteering, also known as conservation volunteering, as a core part of their course. First year Natural Sciences students at Edith Cowan University do five days environmental volunteer work with community groups as a practicum, currently…

  8. Why count trees? Volunteer motivations and experiences with tree monitoring in New York City

    Science.gov (United States)

    Michelle L. Johnson; Lindsay K. Campbell; Erika S. Svendsen; Philip. Silva

    2018-01-01

    Volunteer programs can benefit from a deeper understanding of the motivations and experiences of people engaged in citizen science. Research to date has studied motivations of citizen scientists and tree-planting volunteers. Less work has focused on tree-monitoring volunteers, a role that is rapidly increasing as more cities involve the public in monitoring the urban...

  9. Tapping Global Resources: A Guide to Involving and Managing Online Volunteers.

    Science.gov (United States)

    Moy, Laurie

    2002-01-01

    People with Disabilities Uganda has a corps of 150 online volunteers who work on research, website management, newsletters, marketing and promotions, and program development. People volunteer online for convenience and anonymity. Management of online volunteers requires attention to written communication; a web group is a useful management tool.…

  10. PCCR: Pancreatic Cancer Collaborative Registry

    Science.gov (United States)

    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

  11. The value of trauma registries.

    Science.gov (United States)

    Moore, Lynne; Clark, David E

    2008-06-01

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

  12. Informal learning in youth volunteer work : perspectives from the European Voluntary Service programme

    OpenAIRE

    Hagh Talab, Ayda

    2013-01-01

    The purpose of this study is to examine the link between volunteer work and informal learning among young people. Drawing on the concepts and theories of lifelong learning, informal learning and volunteer work, and building on past research, this thesis explores the case of the European Voluntary Service (EVS), an international volunteering scheme devised by European Commission for youth between 18 and 30 years of age. Through 10 qualitative interviews with former and current EVS volunteers, ...

  13. The consideration of emotional intelligence abilities in event volunteers

    Directory of Open Access Journals (Sweden)

    Reza Andam

    2012-09-01

    Full Text Available The measurement of emotional intelligence abilities is one of the new subjects and important in human behavior studies. According to this matter, purpose of this research is consideration of emotional intelligence abilities in public sport events volunteers in 2011. For this purpose, Bradbury and Cruise's standard questionnaire was completed by present volunteers in event (n=80. The results indicated that 4 levels of emotional intelligence in volunteers are higher than expectational average significantly (p<0.01. Also, priority of emotional intelligence abilities indicated that self-awareness is first priority and social awareness, relationship management and self-management are second, third and fourth priorities in volunteers. Finally, in the basis of parameter, results stated that there is no difference between male and female volunteers emotional intelligence in first Olympia of public sport. According to results of present research and advantages of attention to emotional intelligence and human behavior in organizations, it recommended sport events managers to be more sensitive relative to human behavior abilities in human behavior abilities in human resource (volunteers under his management. At least, result of this meditation in student's sport is recruitment and development of motivated volunteers for continuous attendance in sport events.

  14. The Importance of Patient Registries in Skin of Color.

    Science.gov (United States)

    Hinojosa, Jorge A; Pandya, Amit G

    2017-10-01

    Patient registries serve as powerful and cost-effective research tools that can help improve our understanding of disease pathogenesis and treatment. Although patient registries for various dermatologic diseases currently exist, few address diseases affecting primarily skin of color. Establishing patient registries for diseases that affect skin of color is one potential solution to overcoming some of the limitations researchers face when studying these disorders. Here, we present two patient registries in dermatology that may serve as examples of how patient registries can contribute to advancing our understanding of dermatologic diseases. We also address some of the potential benefits and limitations of patient registries. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

  15. Factors affecting rural volunteering in palliative care - an integrated review.

    Science.gov (United States)

    Whittall, Dawn; Lee, Susan; O'Connor, Margaret

    2016-12-01

    To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment

  16. Higher USA State Resident Neuroticism Is Associated With Lower State Volunteering Rates.

    Science.gov (United States)

    McCann, Stewart J H

    2017-12-01

    Highly neurotic persons have dispositional characteristics that tend to precipitate social anxiety that discourages formal volunteering. With the 50 American states as analytical units, Study 1 found that state resident neuroticism correlated highly ( r = -.55) with state volunteering rates and accounted for another 26.8% of the volunteering rate variance with selected state demographics controlled. Study 2 replicated Study 1 during another period and extended the association to college student, senior, secular, and religious volunteering rates. Study 3 showed state resident percentages engaged in other social behaviors involving more familiarity and fewer demands than formal volunteering related to state volunteering rates but not to neuroticism. In Study 4, state resident neuroticism largely accounted statistically for relations between state volunteering rates and state population density, collectivism, social capital, Republican preference, and well-being. This research is the first to show that state resident neuroticism is a potent predictor of state volunteering rates.

  17. The volunteer program in a Children's Hospice.

    Science.gov (United States)

    Duggal, Shalu; Farah, Peggy; Straatman, Lynn Patricia; Freeman, Leanne; Dickson, Susan

    2008-09-01

    Canuck Place Children's Hospice (CPCH) is regarded as one of the leading pediatric palliative care systems in the world. Since 1995, it has been providing hospice care free of charge to children and their families living with life-threatening conditions. The pediatric palliative hospice is a relatively new practice in health care, in comparison to the longstanding adult model. As a result, development and implementation of volunteer programs in pediatric hospices is not currently represented in literature. With over 300 volunteers at present, CPCH has built a successful program that can serve as a model in pediatric volunteer services. To present the unique volunteer roles and experience at CPCH, and share ways volunteers work to support the efforts of the clinical team. Strategies to address current challenges in the volunteer program are also addressed. Descriptive design. A current CPCH volunteer discusses the volunteer program. Interviews were conducted with the founding volunteer director of CPCH and current volunteers. The volunteer program at CPCH fully embraces the life of each child and family. Volunteer selection is the groundwork for ensuring a cohesive work force, while training equips volunteers with the knowledge to carry out their role with confidence. Areas of improvement that have been recognized include offering effective feedback to volunteers and delivering adequate level of training for non-direct care roles. The talents of volunteers at CPCH are diverse, and CPCH aims to recognize and thank volunteers for their continuous contributions.

  18. Changing Nature of Formal Service Program Volunteering

    NARCIS (Netherlands)

    Hustinx, L.; Shachar, I.Y.; Handy, F.; Smith, D.H.; Smith, D.H.; Stebbins, R.A.; Grotz, J.

    2016-01-01

    Most other chapters in this Handbook focus on volunteering in associations, but this chapter focuses instead mainly on volunteering in volunteer service programs (VSPs). As discussed at length in Handbook Chapter 15, VSPs are essentially volunteer departments of other, larger, controlling, parent

  19. Exploring Volunteering of Committed Young Catholics

    Science.gov (United States)

    Webber, Ruth

    2012-01-01

    This article reports on a study of volunteer levels of Catholics from various World regions who attended an international youth Catholic festival. Volunteering levels, types of volunteering, reason for volunteering, Catholic group membership and pro-social values are analysed. An online survey was administered five months after the Festival to…

  20. Assessing the Value of Volunteer Activity.

    Science.gov (United States)

    Brown, Eleanor

    1999-01-01

    Looks at methods of converting estimates of volunteer time into dollar value of volunteered time. Suggests an alternative strategy that acknowledges the importance of taxes, the provision of volunteer-assisted services at less-than-market prices, and the value of experiences gained by the volunteer. (JOW)

  1. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn

    2016-01-01

    AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...

  2. Environmental Agents Service (EAS) Registry System of Records

    Data.gov (United States)

    Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

  3. Long-Term Engagement in Formal Volunteering and Well-Being: An Exploratory Indian Study.

    Science.gov (United States)

    Elias, Jereesh K; Sudhir, Paulomi; Mehrotra, Seema

    2016-09-27

    Sustained engagement in volunteering and its correlates have been examined in many studies across the globe. However, there is a dearth of research that explores the perspectives of long-term formal volunteers on the nature of changes perceived in oneself as a result of volunteering. Moreover, the linkages between psychological well-being and volunteering have been insufficiently explored. The present study was aimed at addressing these gaps. A heterogeneous sample of 20 long-term formal volunteer engaged in volunteering across different voluntary organisations in a southern metropolitan Indian city formed the primary sample for the study. In addition, a group of 21 short-term volunteers, matched on age, income and gender, was utilised for comparison with long-term volunteers on well-being indices. A semi structured interview schedule was used to explore self-perceived changes attributable to volunteering experience. In addition, a few standardised measures were used to comprehensively assess subjective well-being and psychological well-being. The interview data provided rich descriptions of perceived positive changes in self across cognitive, behavioral and emotional domains. Mirroring these patterns, the quantitative analyses indicated that long-term volunteers experienced higher levels of psychological well-being (sense of mastery and competence, self-acceptance and sense of engagement and growth) than short-term volunteers. The potential mechanisms involved in beneficial outcomes of long-term volunteering and implications for further research are highlighted.

  4. Generation Z’s Sustainable Volunteering: Motivations, Attitudes and Job Performance

    Directory of Open Access Journals (Sweden)

    Meehee Cho

    2018-05-01

    Full Text Available Generation Z (Gen Z, the future of America’s workforce, is forecasted to represent more than 30 million persons by 2020. Volunteer rates have been declining since 2002. Most compelling is that overall lowest volunteer rates were found to be within the Gen Z segment, with expectations of continued decline. Thus, this study explored motivations associated with sustainable volunteering by Gen Z based upon past research that documented intent to volunteer is strongly associated with age. In doing so, the Volunteer Functions Inventory was adopted to identify Gen Z motivations for volunteering. This study then employed the theory of planned behavior to test the relationships between Gen Z volunteering motivations, their attitudes and job performance using data obtained from 306 Gen Z volunteer special event participants. Among five motives identified to be important to Gen Z, only four motives (“value”, “career”, “learning” and “self-esteem” were found to significantly influence their attitudes. The ‘social’ motive was found to have no significant effect on their attitudes towards volunteering. This research framework was supported by validating the significant relationships between volunteer motivations, attitudes and job performance specific to the Gen Z volunteer segment. “Job training appropriateness” was found to be an important moderator for improving the relationships between Gen Z volunteer attitudes and job performance.

  5. Volunteering in the care of people with severe mental illness: a systematic review.

    Science.gov (United States)

    Hallett, Claudia; Klug, Günter; Lauber, Christoph; Priebe, Stefan

    2012-12-13

    Much of the literature to date concerning public attitudes towards people with severe mental illness (SMI) has focused on negative stereotypes and discriminatory behaviour. However, there also exists a tradition of volunteering with these people, implying a more positive attitude. Groups with positive attitudes and behaviours towards people with SMI have received relatively little attention in research. They merit further attention, as evidence on characteristics and experiences of volunteers may help to promote volunteering. The present paper aims to systematically review the literature reporting characteristics, motivations, experiences, and benefits of volunteers in the care of people with SMI. In November 2010, a systematic electronic search was carried out in BNI, CINAHL, Embase, Medline, PsycINFO, Cochrane Registers and Web of Science databases, using a combination of 'volunteer', 'mental health' and 'outcome' search terms. A secondary hand search was performed in relevant psychiatric journals, grey literature and references. 14 papers met the inclusion criteria for the review, with data on a total of 540 volunteers. The results suggest that volunteers are a mostly female, but otherwise heterogeneous group. Motivations for volunteering are a combination of what they can 'give' to others and what they can 'get' for themselves. Overall volunteers report positive experiences. The main benefit to persons with a psychiatric illness is the gaining of a companion, who is non-stigmatizing and proactive in increasing their social-community involvement. The evidence base for volunteers in care of people with SMI is small and inconsistent. However there are potential implications for both current and future volunteering programmes from the data. As the data suggests that there is no 'typical' volunteer, volunteering programmes should recruit individuals from a variety of backgrounds. The act of volunteering can not only benefit people with SMI, but also the volunteers

  6. ATLAS@Home looks for CERN volunteers

    CERN Multimedia

    Rosaria Marraffino

    2014-01-01

    ATLAS@Home is a CERN volunteer computing project that runs simulated ATLAS events. As the project ramps up, the project team is looking for CERN volunteers to test the system before planning a bigger promotion for the public.   The ATLAS@home outreach website. ATLAS@Home is a large-scale research project that runs ATLAS experiment simulation software inside virtual machines hosted by volunteer computers. “People from all over the world offer up their computers’ idle time to run simulation programmes to help physicists extract information from the large amount of data collected by the detector,” explains Claire Adam Bourdarios of the ATLAS@Home project. “The ATLAS@Home project aims to extrapolate the Standard Model at a higher energy and explore what new physics may look like. Everything we’re currently running is preparation for next year's run.” ATLAS@Home became an official BOINC (Berkeley Open Infrastructure for Network ...

  7. The danish multiple sclerosis registry

    DEFF Research Database (Denmark)

    Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon

    2011-01-01

    Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...

  8. VOLUNTEER MANAGEMENT IN ROMANIA - AN EMERGING PRACTICE

    OpenAIRE

    Razvan ANDRONIC

    2010-01-01

    Volunteering is a social practice still rare in Romania, despite the fact that it is an important component of non-governmental organizations; there are types of public organizations based on the contribution of volunteers and voluntary corporate initiatives. Regarding how the volunteers are included in non-governmental organizations, it is noteworthy that there are differences between how the activities are perceived by the volunteers and their supervisor; hence the importance of a volunteer...

  9. Registries in European post-marketing surveillance

    DEFF Research Database (Denmark)

    Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim

    2017-01-01

    PURPOSE: Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed...... for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were...... registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. CONCLUSIONS: The delays found in getting new registries up and running support the need to improve the timeliness of data collection...

  10. Forensic Analysis of Windows Registry Against Intrusion

    OpenAIRE

    Haoyang Xie; Keyu Jiang; Xiaohong Yuan

    2012-01-01

    Windows Registry forensics is an important branch of computer and network forensics. Windows Registry is often considered as the heart of Windows Operating Systems because it contains allof the configuration setting of specific users, groups, hardware, software, and networks. Therefore, Windows Registry can be viewed as a gold mine of forensic evidences which could be used in courts. This paper introduces the basics of Windows Registry, describes its structure and its keys and subkeys thathav...

  11. Pediatric Clinical Trials Conducted in South Korea from 2006 to 2015: An Analysis of the South Korean Clinical Research Information Service, US ClinicalTrials.gov and European Clinical Trials Registries.

    Science.gov (United States)

    Choi, Sheung-Nyoung; Lee, Ji-Hyun; Song, In-Kyung; Kim, Eun-Hee; Kim, Jin-Tae; Kim, Hee-Soo

    2017-12-01

    The status of pediatric clinical trials performed in South Korea in the last decade, including clinical trials of drugs with unapproved indications for children, has not been previously examined. The aim was to provide information regarding the current state of pediatric clinical trials and create a basis for future trials performed in South Korea by reviewing three databases of clinical trials registrations. We searched for pediatric clinical studies (participants South Korea between 2006 and 2015 registered on the Clinical Research Information Service (CRIS), ClinicalTrials.gov, and the European Clinical Trials Registry (EuCTR). Additionally, we reviewed whether unapproved indications were involved in each trial by comparing the trials with a list of authorized trials provided by the Ministry of Food and Drug Safety (MFDS). The primary and secondary outcomes were to determine the change in number of pediatric clinical trials with unapproved indications over time and to assess the status of unauthorized pediatric clinical trials from the MFDS and the publication of articles after these clinical trials, respectively. We identified 342 clinical studies registered in the CRIS (n = 81), ClinicalTrials.gov (n = 225), and EuCTR (n = 36), of which 306 were reviewed after excluding duplicate registrations. Among them, 181 studies were interventional trials dealing with drugs and biological agents, of which 129 (71.3%) involved unapproved drugs. Of these 129 trials, 107 (82.9%) were authorized by the MFDS. Pediatric clinical trials in South Korea aiming to establish the safety and efficacy of drugs in children are increasing; however, non-MFDS-authorized studies remain an issue.

  12. Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database

    DEFF Research Database (Denmark)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri

    2018-01-01

    BACKGROUND: The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. METHODS: We...... estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics...... in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. RESULTS: The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI, 94-99) and 100...

  13. Communicative competence of sport volunteers

    Directory of Open Access Journals (Sweden)

    Irina Petrenko

    2017-02-01

    Full Text Available Purpose: to investigate the level of communicative competence of sport volunteers. Material & Methods: students of Kharkov state academy of physical culture (2–4 courses who are engaged in sports volunteering. The theoretic-methodological analysis of problem is carried out; the technique "Need for communication and achievements", "Self-checking assessment in communication", "Machiavellianism level" is used for studying of indicators of self-assessment. Results: the high level of communicative competence on three indicators is revealed at sport volunteers: need for communication (60,71%, communicative control (57%, Machiavellianism (91% that gives them the chance to come into contacts with people around quickly, to correlate the reactions to behavior of surrounding people and to operate the emotions, at the same time they are inclined to manipulations and demonstration of the strengths at communication with people. Conclusions: the purposeful psychology and pedagogical preparation, which program has to include the communicative block and the block of personal development, is necessary for sport volunteers.

  14. Art Appreciation and Parent Volunteers.

    Science.gov (United States)

    Hamilton, Mary Jane

    1980-01-01

    Described is an art appreciation program made possible through the use of parent volunteers. The collection includes 70 laminated prints and biographical packets, and boxes of artifacts and props which make the prints come alive for 400 elementary school children. (Author/KC) Student Teacher Relationship; *Summer Programs; Talent;

  15. Handbook for Volunteer Reading Aides.

    Science.gov (United States)

    Lane, Martha A.

    This guide is designed to assist volunteer tutors participating in an adult literacy program. Discussed in the first chapter are the meaning of the term functional literacy, the way in which we get meaning from print, and word identification skills. The next two sections deal with the history of literacy education in industrialized countries and…

  16. Volunteered Geographic Information in Wikipedia

    Science.gov (United States)

    Hardy, Darren

    2010-01-01

    Volunteered geographic information (VGI) refers to the geographic subset of online user-generated content. Through Geobrowsers and online mapping services, which use geovisualization and Web technologies to share and produce VGI, a global digital commons of geographic information has emerged. A notable example is Wikipedia, an online collaborative…

  17. Cultural competency and diversity among hospice palliative care volunteers.

    Science.gov (United States)

    Jovanovic, Maja

    2012-05-01

    This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

  18. Volunteers in Palliative Care - A Comparison of Seven European Countries: A Descriptive Study.

    Science.gov (United States)

    Woitha, Kathrin; Hasselaar, Jeroen; van Beek, Karen; Radbruch, Lukas; Jaspers, Birgit; Engels, Yvonne; Vissers, Kris

    2015-07-01

    In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. © 2014 World Institute of Pain.

  19. Hospital administrative characteristics and volunteer resource management practices.

    Science.gov (United States)

    Intindola, Melissa; Rogers, Sean; Flinchbaugh, Carol; Della Pietra, Doug

    2016-05-16

    Purpose - The purpose of this paper is to explore the links between various characteristics of hospital administration and the utilization of classes of volunteer resource management (VRM) practices. Design/methodology/approach - This paper uses original data collected via surveys of volunteer directors in 122 hospitals in five Northeastern and Southern US states. Findings - Structural equation modeling results suggest that number of paid volunteer management staff, scope of responsibility of the primary volunteer administrator, and hospital size are positively associated with increased usage of certain VRM practices. Research limitations/implications - First, the authors begin the exploration of VRM antecedents, and encourage others to continue this line of inquiry; and second, the authors assess dimensionality of practices, allowing future researchers to consider whether specific dimensions have a differential impact on key individual and organizational outcomes. Practical implications - Based on the findings of a relationship between administrative characteristics and the on-the-ground execution of VRM practice, a baseline audit comparing current practices to those VRM practices presented here might be useful in determining what next steps may be taken to focus investments in VRM that can ultimately drive practice utilization. Originality/value - The exploration of the dimensionality of volunteer management adds a novel perspective to both the academic study, and practice, of volunteer management. To the authors' knowledge, this is the first empirical categorization of VRM practices.

  20. Changes in the Determinants of Volunteering: Participation and Time Investment Between 1975 and 2005 in the Netherlands

    NARCIS (Netherlands)

    van Ingen, Erik; Dekker, Paul

    Researchers have examined whether societal developments such as educational expansion, secularization, and changes on the job market affect levels of volunteering. We extend this research by studying the distribution of volunteering or possible changes in the way volunteering is determined. We found

  1. The United States transuranium and uranium registries (USTUR). Learning from plutonium and uranium workers

    International Nuclear Information System (INIS)

    James, A.C.; Brooks, B.G.

    2007-01-01

    Beginning in the 1960's with the mission of acquiring and providing precise information about the effects of plutonium and other transuranic elements in man, the USTUR has followed up to 'old age' almost 500 volunteer Registrants who worked at weapons sites and received measurable internal doses. While failing (despite careful life-time follow-up) to demonstrate deleterious health effects attributable to transuranic elements, USTUR research, based on these real human data from DOE workers, continues its contributions to the development of the biokinetic models used internationally to assess intakes from bioassay data and predict tissue doses. There is still much to learn from the Registries '370 deceased tissue donors and the 110 still-living Registrants, whose average age is now about 76 years (youngest 95 y). This paper illustrates USTUR's current 5-y research program, including the application of registrant case data to (i) quantify the variability in behavior of transuranic materials among individuals; (ii) validate new methodologies used at DOE sites for assessing 'realistic' tissue doses in individual cases; and (iii) model the effectiveness of chelation therapy. These data can also be used to examine the adequacy of protection standards utilized for plutonium workers in the early years of the nuclear industry. (author)

  2. Renal replacement therapy registries--time for a structured data quality evaluation programme

    NARCIS (Netherlands)

    Couchoud, Cécile; Lassalle, Mathilde; Cornet, Ronald; Jager, Kitty J.

    2013-01-01

    Registries in the area of renal replacement therapy (RRT) are intended to be a tool for epidemiological research, health care planning and improvement of quality of care. In this perspective, the value of a population-based RRT registry and its ability to achieve its goals rely heavily on the

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

    Science.gov (United States)

    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…

  4. Is volunteering a public health intervention? A systematic review and meta-analysis of the health and survival of volunteers.

    Science.gov (United States)

    Jenkinson, Caroline E; Dickens, Andy P; Jones, Kerry; Thompson-Coon, Jo; Taylor, Rod S; Rogers, Morwenna; Bambra, Clare L; Lang, Iain; Richards, Suzanne H

    2013-08-23

    unclear. Consequently, there was limited robustly designed research to guide the development of volunteering as a public health promotion intervention. Future studies should explicitly map intervention design to clear health outcomes as well as use pragmatic RCT methodology to test effects.

  5. Danish Registry of Childhood and Adolescent Diabetes

    Directory of Open Access Journals (Sweden)

    Svensson J

    2016-10-01

    Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps

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

    Science.gov (United States)

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

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

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

    Science.gov (United States)

    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

    2013-08-01

    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. © 2013 British Society for Immunology.

  8. CIRSE Vascular Closure Device Registry

    International Nuclear Information System (INIS)

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

    2011-01-01

    Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 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.

  9. Value-Expressive Volunteer Motivation and Volunteering by Older Adults: Relationships With Religiosity and Spirituality.

    Science.gov (United States)

    Okun, Morris A; O'Rourke, Holly P; Keller, Brian; Johnson, Kathryn A; Enders, Craig

    2015-11-01

    This study investigates the interplay among religiosity, spirituality, value-expressive volunteer motivation, and volunteering. We examined religiosity and spirituality as predictors of value-expressive volunteer motivation and volunteering and whether religiosity moderated the relations between (a) spirituality and value-expressive volunteer motivation and (b) value-expressive volunteer motivation and volunteering. After applying multiple imputation procedures to data from the Wisconsin Longitudinal Study among participants 64-67 years old who survived beyond 2004 (N = 8,148), we carried out regression analyses to predict value-expressive volunteer motivation and volunteering from religiosity and spirituality controlling for demographic variables, physical, emotional, and cognitive health, health risk behaviors, and personality traits. Both religiosity and spirituality were significant (p volunteer motivation. Value-expressive volunteer motivation and religiosity were significant (p volunteering. Religiosity amplified the relation between value-expressive volunteer motivation and volunteering (p volunteer motivation (p > .45). Religiosity may provide the way, and value-expressive volunteer motivation the will, to volunteer. The implications of our findings for the forecasted shortage of older volunteers are discussed. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. Secondary prevention in cognitive frailty: the Treviso Dementia Registry

    Directory of Open Access Journals (Sweden)

    Maurizio Gallucci

    2016-09-01

    Full Text Available Dementia is one of the most disabling health conditions for older people. Increasing attention is paid to the preclinical phase such as cognitive frailty and mild cognitive impairment, and to the prevention programs designed to reduce the number of patients in the future. The aims of this brief report are therefore: i to illustrate an action plan currently active in Treviso and that is aimed at secondary prevention in cognitive frailty subjects on the Treviso Dementia (TREDEM Registry; ii to highlight the results achieved by the TREDEM Registry up to now and how these can be used in future research.

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

    Science.gov (United States)

    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.

  12. The Danish Knee Ligament Reconstruction Registry

    Directory of Open Access Journals (Sweden)

    Rahr-Wagner L

    2016-10-01

    Full Text Available Lene Rahr-Wagner, Martin Lind Department of Orthopaedic Surgery, Division of Sports Surgery, Aarhus University Hospital, Aarhus, Denmark Abstract: The Danish Knee Ligament Reconstruction Registry was established in 2005 as a web-based nationwide clinical database with the purpose of improving the monitoring and quality of both primary and revision knee ligament reconstructions in Denmark. All primary and revision anterior and posterior cruciate ligament reconstructions as well as collateral ligament and multiligament reconstructions are recorded. Main variables include sex, age, cause of injury, objective ligament instability, and surgical data, such as affected ligament, graft- and implant choice, operation technique among other things. The operating surgeon prospectively collects the data. Hence, detailed preoperative, intraoperative, and 1-year follow-up data are recorded by the operating surgeon using a standardized form and a secured Internet portal. The number of procedures registered in the database each year is ~2,500 and the first 9 years, in total, 22,775 procedures have been registered. Since the beginning of the database multiple papers have been published in international peer-reviewed journals, improving the knowledge of patients treated with knee ligament reconstruction surgery. This paper reviews the content, organization, and published research from the Danish Knee Ligament Reconstruction Registry. Keywords: ligament reconstruction, anterior cruciate ligament, operation technique, database, graft choice, femoral tunnel drilling, patient-reported outcome measure

  13. [Burnout in volunteer health workers].

    Science.gov (United States)

    Argentero, P; Bonfiglio, N S; Pasero, R

    2006-01-01

    While diverse studies carried out in nursing and medical personnel have demonstrated that health workers can be subject to burnout, little effort has been focused on investigating burnout in volunteer hospital workers. The aim of the present study was to verify if burnout exists with volunteer auxiliary personnel and investigate what organizational conditions may favour it. The study was carried out on 80 volunteer workers of the Red Cross of Mortara (PV), subdivided into two categories: those performing emergency interventions and those performing routine services. For the evaluation of burnout, the Italian version of the Maslach Burnout Inventory was used, together with a qualitative type of methodology. A 5-factor multivariate analysis (sex x shift x team x seniority x role), having as dependent variables the three scales of the MBI, showed that the highest values of depersonalization and fulfillment are found in the emergency team, and that subjects with least seniority are those who are least satisfied or fulfilled. The category of team-leader resulted as that with the highest values of emotional burnout, while sex- and shift-based differences were restricted to routine service workers. Despite these differences, findings showed that subjects are minimally affected by problems linked to burnout, although some relational and organizational difficulties emerged with the medical staff that underlie a certain degree of professional dissatisfaction.

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

    Science.gov (United States)

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

    2018-01-25

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

  15. Informed consent in healthy volunteers: Whom does it protect?

    NARCIS (Netherlands)

    Van Vliet, A.A.; Wemer, J.; Wilffert, B.; De Vroedt, J.W.P.; Jonkman, J.H.G.

    1999-01-01

    In the next decade, centres for research on the safety, tolerability or bioequivalence of new molecular entities will be confronted with numerous compounds, a narrowing time frame for performing Phase I research activities, and a growing demand for healthy volunteers for participation in

  16. Evaluating the Impact of Volunteer Programs.

    Science.gov (United States)

    Culp, Ken, III; Nall, Martha A.

    2001-01-01

    Evaluating the impact of volunteer programs should measure both program outcomes and volunteer growth and development. The Targeting Outcomes of Programs Model is a structured way to collect data on several levels. (SK)

  17. [Volunteer work and potential volunteer work among 55 to 70-year-olds in Germany].

    Science.gov (United States)

    Micheel, Frank

    2017-02-01

    The aim of this article is to describe the potential with respect to volunteer work among 55 to 70-year-old persons along with a two-dimensional typology (actual volunteer work and intention of volunteering or expanding actual volunteer work) and to identify the influencing factors. Based on the dataset from the transitions and old age potential (TOP) study, a total of 4421 men and women born between 1942 and 1958 were included. A multinomial regression model showed the predictors for group affiliation along with an engagement-related typology (internal, utilized and external volunteer potential as well as definite non-volunteers). More than a half of the persons in the study sample could be classified as internal or external volunteer potential. Volunteers and potential volunteers revealed more similarities regarding resources and social factors than potential volunteers and definite non-volunteers. Potential volunteers were more active in other informal fields of activity (e.g. nursing or child care) than definite non-volunteers. With respect to volunteer work, definite non-volunteers showed various social disadvantages (in particular with respect to education and health) compared to (potential) volunteers. Other informal activities did not seem to be in major conflict with volunteer activities, e.g. nursing or child care, as long as they were carried out with moderate or low intensity.

  18. Volunteering as a predictor of all-cause mortality: what aspects of volunteering really matter?

    Science.gov (United States)

    Ayalon, Liat

    2008-10-01

    This study evaluates the predictive effects of different aspects of volunteering (e.g. volunteering status, number of hours, number of years, and type of volunteering activity) on all-cause mortality. A seven-year follow-up dataset of a nationally representative sample of Israelis, 60 years and older was used. As expected, volunteering was associated with a reduced mortality risk even after adjusting for age, gender, education, baseline mental health and physical health, activity level, and social engagement. Those who volunteered for 10 to 14 years had a reduced mortality risk relative to non-volunteers. In addition, those who volunteered privately, not as part of an official organization, also had a reduced mortality risk compared to non-volunteers. The number of hours of volunteering was not a significant predictor of all-cause mortality in the fully adjusted model. In additional sensitivity analyses limited to those who volunteered, none of the various aspects of volunteering was associated with a reduced mortality risk. Results suggest that not all aspects of volunteering have the same predictive value and that the protective effects of length of volunteering time and type of volunteering are particularly important. However, whether or not volunteering is the most consistent predictor of mortality and whether once a person volunteers the various aspects of volunteering are no longer associated with mortality risk.

  19. Autologous blood cell transplantation versus HLA-identical sibling transplantation for acute myeloid leukemia in first complete remission: a registry study from the Center for International Blood and Marrow Transplantation Research

    Science.gov (United States)

    Keating, Armand; DaSilva, Gisela; Pérez, Waleska S.; Gupta, Vikas; Cutler, Corey S.; Ballen, Karen K.; Cairo, Mitchell S.; Camitta, Bruce M.; Champlin, Richard E.; Gajewski, James L.; Lazarus, Hillard M.; Lill, Michael; Marks, David I.; Nabhan, Chadi; Schiller, Gary J.; Socie, Gerald; Szer, Jeffrey; Tallman, Martin S.; Weisdorf, Daniel J.

    2013-01-01

    The optimal post-remission treatment for acute myeloid leukemia in first complete remission remains uncertain. Previous comparisons of autologous versus allogeneic hematopoietic cell transplantation noted higher relapse, but lower treatment-related mortality though using bone marrow grafts, with treatment-related mortality of 12-20%. Recognizing lower treatment-related mortality using autologous peripheral blood grafts, in an analysis of registry data from the Center for International Blood and Transplant Research, we compared treatment-related mortality, relapse, leukemia-free survival, and overall survival for patients with acute myeloid leukemia in first complete remission (median ages 36-44, range 19-60) receiving myeloablative HLA-matched sibling donor grafts (bone marrow, n=475 or peripheral blood, n=428) versus autologous peripheral blood (n=230). The 5-year cumulative incidence of treatment-related mortality was 19% (95% confidence interval, 16-23%), 20% (17-24%) and 8% (5-12%) for allogeneic bone marrow, allogeneic peripheral blood and autologous peripheral blood stem cell transplant recipients, respectively. The corresponding figures for 5-year cumulative incidence of relapse were 20% (17-24%), 26% (21-30%) and 45% (38-52%), respectively. At 5 years, leukemia-free survival and overall survival rates were similar: allogeneic bone marrow 61% (56-65%) and 64% (59-68%); allogeneic peripheral blood 54% (49-59%) and 59% (54-64%); autologous peripheral blood 47% (40-54%) and 54% (47-60%); P=0.13 and P=0.19, respectively. In multivariate analysis the incidence of treatment-related mortality was lower after autologous peripheral blood transplantation than after allogeneic bone marrow/peripheral blood transplants [relative risk 0.37 (0.20-0.69); P=0.001], but treatment failure (death or relapse) after autologous peripheral blood was significantly more likely [relative risk 1.32 (1.06-1.64); P=0.011]. The 5-year overall survival, however, was similar in patients who

  20. "Purely for You": Inmates' Perceptions of Prison Visitation by Volunteers in the Netherlands.

    Science.gov (United States)

    Schuhmann, Carmen; Kuis, Esther; Goossensen, Anne

    2018-03-01

    Research suggests that prison visitation by volunteers may significantly reduce the risk of recidivism. Community volunteers offer sustained, prosocial support to inmates which may account for these beneficial effects. However, the question of how inmates themselves evaluate volunteer visitation has hardly been studied. This study explores how inmates of Dutch prisons who receive one-on-one volunteer visits experience and value these visits. To that end, semistructured interviews were conducted with 21 inmates across six penitentiaries. These show that the value of volunteer visitation for inmates has to be understood in terms of a human-to-human encounter. Visits by volunteers provide inmates with rare opportunities to have a confidential conversation, away from the harshness of the usual prison life. Furthermore, inmates perceive volunteer visitation as beneficial beyond the actual visits. Inmates draw hope, strength, or self-respect from the conversations; they see volunteers as role models and develop a more positive view of the future. Two potential obstacles to beneficial volunteer visitation were detected: lack of chemistry between volunteer and inmate and imposition of worldview beliefs by volunteers.

  1. The personal value of being a palliative care Community Volunteer Worker in Uganda: a qualitative study.

    Science.gov (United States)

    Jack, Barbara A; Kirton, Jennifer A; Birakurataki, Jerith; Merriman, Anne

    2012-07-01

    Volunteers in palliative care play a key role, particularly in the hospice setting. The expansion of palliative care into developing countries has been accompanied by the emergence of volunteer workers, who are providing a main source of support and care for patients, many of whom never see a health professional. The aim of this study was to evaluate the motivation for becoming a volunteer and the personal impact of being a palliative care Community Volunteer Worker in Uganda. A qualitative methodology using semi-structured individual and group digitally recorded interviews was adopted for the study. Data were analysed for emerging themes using thematic analysis. Forty-three interviews were undertaken, 32 with Community Volunteer Workers and 11 with the Hospice clinical teams, using semi-structured digitally recorded individual, group and focus group interviews at the Hospice Africa sites in Uganda. The results identified the cultural wish to help people as a key motivator in becoming a volunteer. Additionally, the volunteers reported having a sense of pride in their volunteering role, and this role had a positive impact on their perceived status in their local community. This model of volunteering is clearly having an impact on the volunteers, both personally and also in terms of how they are treated in their communities. Further research to explore the long-term personal benefits of being a palliative care volunteer is recommended.

  2. 76 FR 29720 - Information Collection: Volunteer Programs

    Science.gov (United States)

    2011-05-23

    ... designed to provide educationally related work assignments for students in non-pay status. The volunteer... DEPARTMENT OF AGRICULTURE Farm Service Agency Information Collection: Volunteer Programs AGENCY... the Volunteer Programs. DATES: We will consider comment that we received by July 22, 2011. ADDRESSES...

  3. Student Volunteering in English Higher Education

    Science.gov (United States)

    Holdsworth, Clare; Quinn, Jocey

    2010-01-01

    Volunteering in English higher education has come under political scrutiny recently, with strong cross-party support for schemes to promote undergraduate volunteering in particular. Recent targeted initiatives and proposals have sought to strengthen both the role of volunteering in higher education and synergies between higher education and…

  4. Volunteer Motivations and Rewards: Shaping Future Programs.

    Science.gov (United States)

    McClam, Tricia

    Volunteerism is increasing today and helps to fill in the gaps created by funding and staff cutbacks in service-oriented agencies. It is critical not only to recruit new volunteers but to retain volunteers. This study examines hospice volunteers for motivation and rewards. Previous studies have found motivations to include altruism and…

  5. Effective Motivators for Master Volunteer Program Development.

    Science.gov (United States)

    Wolford, Marjorie; Cox, Kathryn; Culp, Ken III

    2001-01-01

    A survey of 797 extension master volunteers in Ohio received 200 usable responses indicating that achievement was rated as the most important motive for beginning service as a master volunteer. As they continued to volunteer, affiliation became the most important motive. Intrinsic forms of recognition (e.g., receiving compliments) were rated most…

  6. The Dynamic Tension: Professionals and Volunteers.

    Science.gov (United States)

    Snider, Alan

    1985-01-01

    Describes results of a study focused on the role and relationship of 4-H agents working with program management volunteers in clubs, communities, and counties. Factors found to be instrumental in the expanded involvement of key volunteers include agent self-confidence, belief in volunteerism, strong support system, and careful volunteer selection.…

  7. The Danish National Multiple Myeloma Registry

    Directory of Open Access Journals (Sweden)

    Gimsing P

    2016-10-01

    Full Text Available Peter Gimsing,1 Morten O Holmström,2 Tobias Wirenfelt Klausen,3 Niels Frost Andersen,4 Henrik Gregersen,5 Robert Schou Pedersen,6 Torben Plesner,7 Per Trøllund Pedersen,8 Mikael Frederiksen,9 Ulf Frølund,2 Carsten Helleberg,3 Annette Vangsted,1 Peter de Nully Brown,1 Niels Abildgaard,10   On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark Aim: The Danish National Multiple Myeloma Registry (DMMR is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research.Study population: All newly diagnosed patients with multiple myeloma (MM, smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome, monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with

  8. Applying Western models of volunteering in Hong Kong : The role of empathy, prosocial motivation and motive-experience fit for volunteering

    NARCIS (Netherlands)

    Aydinli, A.; Bender, M.; Chong, A.; Yue, X.

    2016-01-01

    The present research investigates the applicability of prominent Western volunteering frameworks in Hong Kong. Two cross-sectional surveys involving a total of 268 respondents were conducted. In Study 1, we tested a model of volunteering among 149 Hong Kong Chinese adult individuals (Mage = 34.8

  9. The role of a decision-support smartphone application in enhancing community health volunteers' effectiveness to improve maternal and newborn outcomes in Nairobi, Kenya: quasi-experimental research protocol.

    Science.gov (United States)

    Bakibinga, Pauline; Kamande, Eva; Omuya, Milka; Ziraba, Abdhalah K; Kyobutungi, Catherine

    2017-07-20

    Improving maternal and newborn survival remains major aspirations for many countries in the Global South. Slum settlements, a result of rapid urbanisation in many developing countries including Kenya, exhibit high levels of maternal and neonatal mortality. There are limited referral mechanisms for sick neonates and their mothers from the community to healthcare facilities with ability to provide adequate care. In this study, we specifically plan to develop and assess the added value of having community health volunteers (CHVs) use smartphones to identify and track mothers and children in a bid to reduce pregnancy-related complications and newborn deaths in the urban slums of Kamukunji subcounty in Nairobi, Kenya. This is a quasi-experimental study. We are implementing an innovative, mHealth application known as mobile Partnership for Maternal, Newborn and Child Health (mPAMANECH) which uses dynamic mobile phone and web-portal solutions to enable CHVs make timely decisions on the best course of action in their management of mothers and newborns at community level. The application is based on existing guidelines and protocols in use by CHVs. Currently, CHVs conduct weekly home visits and make decisions from memory or using unwieldy manual tools, and thus prone to making errors. mPAMANECH has an in-built algorithm that makes it easier, faster and more likely for CHVs to make the right management decision. We are working with a network of selected CHVs and maternity centres to pilot test the tool. To measure the impact of the intervention, baseline and end-line surveys will be conducted. Data will be obtained through qualitative and quantitative methods. Ethical approval for the study was obtained from the African Medical Research Foundation. Key messages from the results will be packaged and disseminated through meetings, conference presentations, reports, fact sheets and academic publications to facilitate uptake by policy-makers. © Article author(s) (or their

  10. The Fourth International Network of Twin Registries: Overview from Osaka/Research Reviews: Familial Fraternal Twinning; Twin Study of Masculine Faces; Physical Aggression and Epigenetics; Prenatal Education for Parents of Twins/Current Events: 2016 Guinness Book of World Records; Oldest Living Male Twins; Twins Reunited at Sixty-Nine; Panda Twins; Twins.com.

    Science.gov (United States)

    Segal, Nancy L

    2015-12-01

    The 4th International Network of Twin Registries (INTR) Consortium Meeting took place in Osaka, Japan, September 28-29, 2015. The venue was the Osaka Medical Center for Medical Innovation and Translational Research. An overview of presentations and other activities is provided. Next, 1930s research on familial fraternal twinning, preference for masculine faces, physical aggression and epigenetics, and a prenatal education program for parents of multiples are described. Current twin-related events include the 2016 Guinness Book of World Records (GWR), the oldest living male twins, newly reunited twins, the birth of panda twins and a controversial twin-based website.

  11. Monozygotic triplets: concordance and discordance for cleft lip and palate / twin research reviews: depression in mothers of multiples; depression in mothers and fathers of ART conceived multiples; epigenetic differences in monozygotic twins; congenital anomalies in surviving twins / headlines x two: twin Chefs; the world's largest twin registry; twin table tennis champions.

    Science.gov (United States)

    Segal, Nancy L

    2009-08-01

    A review of twin research on cleft lip and palate is presented. This information is accompanied by a look at the lives of young monozygotic (MZ) male triplets concordant for cleft lip, but discordant for the type and placement of the cleft and for the presence of cleft palate. Research on depression in mothers and fathers of twins conceived naturally and by artificial reproductive techniques follows. Current findings and implications of epigenetic differences in MZ twins are also summarized. Interesting life history events surrounding MZ twin chefs and table tennis players, as well as plans to construct the world's largest twin registry, are presented in the final section.

  12. The Danish Heart Failure Registry

    DEFF Research Database (Denmark)

    Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth

    2016-01-01

    AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...

  13. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    2011-01-01

    ), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information......Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR...

  14. Assessing the impacts of international volunteer tourism in host communities: A new approach to organizing and prioritizing indicators

    Science.gov (United States)

    Christopher Anthony Lupoli; Wayde C. Morse; Conner Bailey; John Schelhas

    2014-01-01

    This paper explores the use of indicators to evaluate the impacts of volunteer tourism in host communities, based on an online questionnaire sent to 183 volunteer tourism organizations. Little research exists demonstrating how volunteer tourism programs impact host communities or how impacts can be assessed, but the literature suggests the use of indicators to do so....

  15. The GEOSS Component and Service Registry

    Science.gov (United States)

    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

  16. Quality of trauma care and trauma registries.

    Science.gov (United States)

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

    2015-03-01

    Traumatic disease is a major public health concern. Monitoring the quality of services provided is essential for the maintenance and improvement thereof. Assessing and monitoring the quality of care in trauma patient through quality indicators would allow identifying opportunities for improvement whose implementation would improve outcomes in hospital mortality, functional outcomes and quality of life of survivors. Many quality indicators have been used in this condition, although very few ones have a solid level of scientific evidence to recommend their routine use. The information contained in the trauma registries, spread around the world in recent decades, is essential to know the current health care reality, identify opportunities for improvement and contribute to the clinical and epidemiological research. Copyright © 2014 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.

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

    Science.gov (United States)

    Scott, Anna Mae

    2017-03-01

    of the technology on a temporary basis while additional evidence is collected. Clinical registries have been suggested as a means of collecting additional evidence in these situations. What is does this paper add? It is currently unknown whether evidence from clinical registries is used to resolve uncertainties identified at the time that temporary (interim) funding decisions are made by Australia's HTA bodies, in particular MSAC. The present study found that MSAC rarely relies on the interim funding mechanism (17/173 assessments). Of the 11 subsequent reassessments of interim recommendations, two relied on registry evidence to provide Australian-specific data for addressing uncertainties around long-term safety, effectiveness and cost-effectiveness. These findings suggest that clinical registries, although a feasible source of evidence for HTAs, are rarely used for this purpose. What are the implications for practitioners? Given the registries' ability to resolve both a wider range of questions than those typically addressed by randomised control trials and applicability to a wider group of patients (and, hence, providing estimates of outcomes that are more generalisable), the potential of clinical registries to resolve HTA issues needs more attention from both researchers and decision makers. Stakeholder collaboration to define the evidence requirements for new technologies early in their development phase would be valuable to determine the potential role for clinical registries.

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

    Directory of Open Access Journals (Sweden)

    Christopher J. Ryerson

    2016-01-01

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

  19. On Domain Registries and Website Content

    DEFF Research Database (Denmark)

    Schwemer, Sebastian Felix

    2018-01-01

    such as Internet access service providers, hosting platforms, and websites that link to content. This article shows that in recent years, however, that the (secondary) liability of domain registries and registrars, and more specifically country code top-level domain registries (ccTLDs) for website content, has...... been tested in several EU Member States. The article investigates tendencies in the national lower-court jurisprudence and explores to what extent the liability exemption regime of the E-Commerce Directive applies to domain registries. The analysis concludes that whereas domain registries fall under...

  20. The Work–Home Interface : Linking Work-Related Wellbeing and Volunteer Work

    OpenAIRE

    Brauchli, Rebecca; Peeters, Maria C W; van Steenbergen, Elianne F.; Wehner, Theo; Hämmig, Oliver

    2017-01-01

    An abundance of research shows the benefits of participation in volunteer work for individuals, employers and the society as a whole. However, relatively little is known about the precursors of volunteer work. In this study, we aim to fill this gap by investigating to what extent work-related well-being can function as a driver of volunteer work. Moreover, building on the Conservations of Resources Theory (Hobfoll,), we propose that the relationship between work-related well-being (burnout an...

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

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available 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.

  2. Improving quality of life in ageing populations: what can volunteering do?

    Science.gov (United States)

    Cattan, Mima; Hogg, Eddy; Hardill, Irene

    2011-12-01

    The year 2011 was declared the 'European Year of Volunteering' to recognise the contribution volunteers make to society. Such cross-national events reflect the high profile of volunteering and political imperatives to promote it. The purpose of this review is to provide a comprehensive review of current knowledge (articles published between 2005 and 2011) regarding the role of volunteering in improving older people's quality of life (QoL) and to identify areas requiring further research. Volunteering was defined as an activity that is freely chosen, does not involve remuneration and helps or benefits those beyond an individual's immediate family. Our search identified 22 studies and 5 review articles that addressed the benefits of volunteering on older people's quality of life. Most of the research had been conducted in the United States, Canada and Australia using data from longitudinal studies. The majority of the studies concluded that there is a positive association between older people's quality of life and engagement in volunteering. Due to the study designs and the heterogeneity of the research, causality is difficult to demonstrate and the knowledge the studies bring to the subject is variable. This review shows that volunteering may help to maintain and possibly improve some older adults' quality of life. However, there are still major gaps in our understanding of who actually benefits, the social and cultural context of volunteering and its role in reducing health and social inequalities. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  3. Examining Volunteer Motivations and Recruitment Strategies For Engagement in Urban Forestry

    Directory of Open Access Journals (Sweden)

    Christine Moskell

    2010-01-01

    Full Text Available Few studies in urban forestry have examined the motivations of urban forestry volunteers. In this research, two social psychological theories (Volunteer Functions Inventory and Volunteer Process Model are utilized to examine motivations for participating in tree planting activities. The Volunteer Functions Inventory can be used to examine the needs, goals and motivations that individuals seek to fulfill through volunteerism. The Volunteer Process Model sheds light on the antecedents, experiences and consequences of volunteerism at multiple levels (individual, interpersonal, organizational, societal. An understanding of volunteer motivations can aid practitioners in the development and implementation of participatory urban forestry programs that are attractive to stakeholders. We conducted a survey of volunteers who participated in a MillionTreesNYC volunteer planting event and a focus group of urban forestry practitioners. Survey results reveal that volunteers have varied motivations and a limited knowledge of the community level impacts of trees. Results from the focus group reveal that providing education about the benefits of trees and maintaining long-term communication with volunteers are frequently used strategies for engagement. However, the public’s lack of knowledge about urban forestry and an inability to connect to audiences are practitioner-identified challenges for recruiting stakeholders to participate in their programs.

  4. Private provider participation in statewide immunization registries

    Directory of Open Access Journals (Sweden)

    Cowan Anne E

    2006-02-01

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

  5. Improving Wellbeing and Environmental Stewardship Through Volunteering in Nature.

    Science.gov (United States)

    Molsher, Robyn; Townsend, Mardie

    2016-03-01

    Environmental volunteering (EV) can provide a unique way to optimise the wellbeing of participants while fostering environmental stewardship. However, the potential of EV to create human health benefits remains an under-researched area. This study provides evidence for improved wellbeing and mood state for 32 participants from diverse backgrounds undertaking EV activities. Most participants also reported improved environmental stewardship with a greatly improved understanding of the environment and the need to conserve it. Other benefits included: 31% of those seeking work obtained it; and 50% joined a volunteer group at program completion. EV provides a unique mechanism to enhance the wellbeing of the participants, while conserving the environment.

  6. Organizational Structures and Data Use in Volunteer Monitoring Organizations (VMOs)

    Science.gov (United States)

    Laird, Shelby Gull; Nelson, Stacy A. C.; Stubbs, Harriett S.; James, April L.; Menius, Erika

    2012-01-01

    Complex environmental problems call for unique solutions to monitoring efforts alongside developing a more environmentally literate citizenry. Community-based monitoring (CBM) through the use of volunteer monitoring organizations helps to provide a part of the solution, particularly when CBM groups work with research scientists or government…

  7. Key Strengths of an Innovative Volunteer Training Workshop

    Science.gov (United States)

    Sellick, Angelika; Bournot-Trites, Monique; Reeder, Ken; Scales, Andrew; Smith, Mark; Zappa-Hollman, Sandra

    2011-01-01

    The study involved 14 volunteer facilitators, four UBC staff members, and the researcher as participant; the data collected were observation notes, questionnaires, results from focus groups, and interviews. The study revealed that the key strengths of the training workshop lay in its approach to training, its focus on confidence and capacity…

  8. Volunteer computers in homes to fight against Malaria in Africa

    CERN Multimedia

    2006-01-01

    "Africa@home, a project conceived and coordinated by CERN1, was launched publicly this week. It is recruiting volunteer computers in homes and offices to run a computer-intensive simulation program called MalariaControl.net, developed by researchers at the Swiss Tropical Institute (STI)" (1 page)

  9. Does Volunteering Experience Influence Advance Care Planning in Old Age?

    Science.gov (United States)

    Shen, Huei-Wern; Khosla, Nidhi

    2016-07-01

    Advance care planning (ACP) increases the likelihood patients will receive end-of-life care that is congruent with their preferences and lowers stress among both patients and caregivers. Previous efforts to increase ACP have mainly focused on information provision in the very late stage of life. This study examines whether a relationship exists between volunteering and ACP, and whether this relationship is associated with social support. The sample comprises 877 individuals who were aged 55+ in 2008, and were deceased before 2010. The sample is derived from seven waves (1998-2010) of data from the Health and Retirement Study. Logistic regression results showed that overall ACP and durable power of attorney for health care (DPAHC) were both higher (OR = 1.61 and 1.71, respectively) for older adults with volunteering experience in the past 10 years than those without such experience. Available social support (relatives and friends living nearby) was not associated with the relationship between volunteering and ACP. Other factors related to ACP included poorer health, death being expected, death due to cancer, older age, and being a racial minority. Involving older people in volunteer work may help to increase ACP. Future research is encouraged to identify reasons for the association between volunteering and ACP.

  10. Volunteer Clouds and Citizen Cyberscience for LHC Physics

    International Nuclear Information System (INIS)

    Aguado Sanchez, Carlos; Blomer, Jakob; Buncic, Predrag; Ellis, John; Harutyunyan, Artem; Marquina, Miguel; Mato, Pere; Schulz, Holger; Segal, Ben; Sharma, Archana; Skands, Peter; Chen Gang; Wu Jie; Wu Wenjing; Garcia Quintas, David; Grey, Francois; Lombrana Gonzalez, Daniel; Rantala, Jarno; Weir, David; Yadav, Rohit

    2011-01-01

    Computing for the LHC, and for HEP more generally, is traditionally viewed as requiring specialized infrastructure and software environments, and therefore not compatible with the recent trend in v olunteer computing , where volunteers supply free processing time on ordinary PCs and laptops via standard Internet connections. In this paper, we demonstrate that with the use of virtual machine technology, at least some standard LHC computing tasks can be tackled with volunteer computing resources. Specifically, by presenting volunteer computing resources to HEP scientists as a v olunteer cloud , essentially identical to a Grid or dedicated cluster from a job submission perspective, LHC simulations can be processed effectively. This article outlines both the technical steps required for such a solution and the implications for LHC computing as well as for LHC public outreach and for participation by scientists from developing regions in LHC research.

  11. A Systems Perspective on Volunteered Geographic Information

    Directory of Open Access Journals (Sweden)

    Victoria Fast

    2014-12-01

    Full Text Available Volunteered geographic information (VGI is geographic information collected by way of crowdsourcing. However, the distinction between VGI as an information product and the processes that create VGI is blurred. Clearly, the environment that influences the creation of VGI is different than the information product itself, yet most literature treats them as one and the same. Thus, this research is motivated by the need to formalize and standardize the systems that support the creation of VGI. To this end, we propose a conceptual framework for VGI systems, the main components of which—project, participants, and technical infrastructure—form an environment conducive to the creation of VGI. Drawing on examples from OpenStreetMap, Ushahidi, and RinkWatch, we illustrate the pragmatic relevance of these components. Applying a system perspective to VGI allows us to better understand the components and functionality needed to effectively create VGI.

  12. Data Type Registry - Cross Road Between Catalogs, Data And Semantics

    Science.gov (United States)

    Richard, S. M.; Zaslavsky, I.; Bristol, S.

    2017-12-01

    As more data become accessible online, the opportunity is increasing to improve search for information within datasets and for automating some levels of data integration. A prerequisite for these advances is indexing the kinds of information that are present in datasets and providing machine actionable descriptions of data structures. We are exploring approaches to enabling these capabilities in the EarthCube DigitalCrust and Data Discovery Hub Building Block projects, building on the Data type registry (DTR) workgroup activity in the Research Data Alliance. We are prototyping a registry implementation using the CNRI Cordra platform and API to enable 'deep registration' of datasets for building hydrogeologic models of the Earth's Crust, and executing complex science scenarios for river chemistry and coral bleaching data. These use cases require the ability to respond to queries such as: What are properties of Entity X; What entities include property Y (or L, M, N…), and What DataTypes are about Entity X and include property Y. Development of the registry to enable these capabilities requires more in-depth metadata than is commonly available, so we are also exploring approaches to analyzing simple tabular data to automate recognition of entities and properties, and assist users with establishing semantic mappings to data integration vocabularies. This poster will review the current capabilities and implementation of a data type registry.

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

    Science.gov (United States)

    Avcin, T; Cimaz, R; Rozman, B

    2009-09-01

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

  14. Assessing the religious roots of volunteer work in middle and late life.

    Science.gov (United States)

    Krause, Neal

    2015-07-01

    Research reveals that older people do a significant amount of volunteer work. Moreover, a good deal of this volunteering takes place in religious institutions. The purpose of this study is to examine how social factors in the church influence the decision to volunteer. The analyses are conducted in two steps. First, data from a longitudinal nationwide survey of older people are used to show that increases in spiritual support (i.e., assistance from fellow church members that is designed to bolster religious beliefs and behaviors) are associated with increases in the frequency of volunteer work. Second, cross-sectional analyses from the same survey suggest that spiritual support is associated with volunteering in part because it promotes greater compassion. However, the magnitude of the relationship between compassion and volunteering is fairly modest. © The Author(s) 2014.

  15. School-based mentoring: A study of volunteer motivations and benefits

    Directory of Open Access Journals (Sweden)

    Paul CALDARELLA

    2010-03-01

    Full Text Available While research has been conducted concerning the effects of school-based mentoring on atrisk students, limited work has focused on the volunteer mentors. This study examined the motivations of adult volunteers and the benefits of their participation in a six-month,school-based mentoring program. A total of 31 volunteers completed adapted versions of the Volunteer Functions Inventory and a post-survey as part of a program in which they mentored at-risk elementary school students. Volunteers were more satisfied with theirmentoring experience when their perceived benefits matched their initial motivations, though this did not seem to impact their intentions to mentor again in the future. Volunteers’ motivations tended toward expressing important values or gaining greaterunderstanding, though some younger volunteers were also motivated to gain career-related experience. Implications for school-based mentoring programs are addressed.

  16. Self-esteem mediates the relationship between volunteering and depression for African American caregivers.

    Science.gov (United States)

    Shen, Huei-Wern; Pickard, Joseph G; Johnson, Sharon D

    2013-01-01

    Research on the influence of volunteering on mental health outcomes has not placed enough focus on African American female caregivers who are at risk for adverse outcomes such as depression. This study addresses this gap by examining the mechanism through which volunteering might influence depressive symptoms using data collected from 521 African American female caregivers of older adults. Regression results indicate that although volunteering is inversely associated with depressive symptoms, self-esteem mediates this relationship. Findings suggest inclusion in volunteering for African American female caregivers may be relevant to promotion of their mental well-being.

  17. Service registry design: an information service approach

    NARCIS (Netherlands)

    Ferreira Pires, Luis; Wang, J.; van Oostrum, Arjen; Wijnhoven, Alphonsus B.J.M.

    2010-01-01

    A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues,

  18. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    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 www...

  19. The Danish National Chronic Lymphocytic Leukemia Registry

    DEFF Research Database (Denmark)

    da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth

    2016-01-01

    AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...

  20. 45 CFR 1217.6 - Roles of volunteers.

    Science.gov (United States)

    2010-10-01

    ... communication of VISTA policies to VISTA volunteers. (c) Encourage and develop VISTA volunteer leadership and... 45 Public Welfare 4 2010-10-01 2010-10-01 false Roles of volunteers. 1217.6 Section 1217.6 Public... VISTA VOLUNTEER LEADER § 1217.6 Roles of volunteers. VISTA volunteer leaders may have the following...

  1. Windows registry forensics advanced digital forensic analysis of the Windows registry

    CERN Document Server

    Carvey, Harlan

    2011-01-01

    Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

  2. Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database: A Validation Study.

    Science.gov (United States)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David

    2018-01-15

    The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI, 94-99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87%-100% in the Cancer Registry and 93%-100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95.0% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database are high, supporting their use in epidemiologic studies.

  3. The Italian National Rare Diseases Registry.

    Science.gov (United States)

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

    2014-04-01

    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. 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. 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. 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.

  4. Volunteer motivators for participating in HIV vaccine clinical trials in Nairobi, Kenya.

    Directory of Open Access Journals (Sweden)

    Borna A Nyaoke

    Full Text Available 1.5 million Kenyans are living with HIV/AIDS as per 2015 estimates. Though there is a notable decline in new HIV infections, continued effort is still needed to develop an efficacious, accessible and affordable HIV vaccine. HIV vaccine clinical trials bear risks, hence a need to understand volunteer motivators for enrolment, retention and follow-up. Understanding the factors that motivate volunteers to participate in a clinical trial can help to strategize, refine targeting and thus increase enrolment of volunteers in future HIV vaccine clinical trials. The health belief model classifies motivators into social benefits such as 'advancing research' and collaboration with science, and personal benefits such as health benefits and financial interests.A thematic analysis was carried out on data obtained from four HIV clinical trials conducted at KAVI-Institute of Clinical Research in Nairobi Kenya from 2009 to 2015. Responses were obtained from a Questionnaire administered to the volunteers during their screening visit at the research site.Of the 281 healthy, HIV-uninfected volunteers participating in this study; 38% were motivated by personal benefits including, 31% motivated by health benefits and 7% motivated by possible financial gains. In addition, 62% of the volunteers were motivated by social benefits with 20% of who were seeking to help their family/society/world while 42% were interested in advancing research.The majority of volunteers in the HIV vaccine trials at our site were motivated by social benefits, suggesting that altruism can be a major contributor to participation in HIV vaccine studies. Personal benefits were a secondary motivator for the volunteers. The motivators to volunteer in HIV clinical trials were similar across ages, education level and gender. Education on what is needed (including volunteer participation to develop an efficacious vaccine could be the key to greater volunteer motivation to participate in HIV vaccine

  5. The Effect of Volunteer Work on Employability

    DEFF Research Database (Denmark)

    Petrovski, Erik; Dencker-Larsen, Sofie; Holm, Anders

    2017-01-01

    In addition to benefiting others, volunteer work is argued to supply volunteers themselves with skills, reputation, and social connections that increase overall employability. We test this hypothesized causal link between volunteer work and employability with a high-quality 2012 Danish survey sam...... show that performing volunteer work does not statistically significantly affect the risk or rate of unemployment for the typical individual on the labour market....... sample of 1,867 individuals of working age. The survey data are linked to administrative registers containing individual-level data on unemployment. A combination of detailed controls, lagged dependent variables, and instrumental variable regression is used to determine cause and effect. Our findings...

  6. The Danish National Chronic Myeloid Neoplasia Registry

    Directory of Open Access Journals (Sweden)

    Bak M

    2016-10-01

    Full Text Available Marie Bak,1 Else Helene Ibfelt,2 Thomas Stauffer Larsen,3 Dorthe Rønnov-Jessen,4 Niels Pallisgaard,5 Ann Madelung,6 Lene Udby,1 Hans Carl Hasselbalch,1 Ole Weis Bjerrum,7 Christen Lykkegaard Andersen1,7 1Department of Hematology, Zealand University Hospital, University of Copenhagen, Roskilde, 2Research Centre for Prevention and Health, Rigshospitalet Glostrup, University of Copenhagen, Glostrup, 3Department of Hematology, Odense University Hospital, Odense, 4Department of Hematology, Vejle Hospital, Vejle, 5Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Roskilde, 6Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Næstved, 7Department of Hematology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark Aim: The Danish National Chronic Myeloid Neoplasia Registry (DCMR is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital departmental levels and serve as a platform for research. Study population: The DCMR has nationwide coverage and contains information on patients diagnosed at hematology departments from January 2010 onward, including patients with essential thrombocythemia, polycythemia vera, myelofibrosis, unclassifiable myeloproliferative neoplasms, chronic myelomonocytic leukemia, and chronic myeloid leukemia. Main variables: Data are collected using standardized registration forms (so far up to four forms per patient, which are consecutively filled out online at time of diagnosis, after 2-year and 5-year follow-ups, and at end of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival – disease-specific variables – as well as variables that are identical for all chronic myeloid malignancies. Descriptive

  7. 20 CFR 10.730 - What are the conditions of coverage for Peace Corps volunteers and volunteer leaders injured...

    Science.gov (United States)

    2010-04-01

    ... Corps volunteers and volunteer leaders injured while serving outside the United States? 10.730 Section... Corps volunteers and volunteer leaders injured while serving outside the United States? (a) Any injury sustained by a volunteer or volunteer leader while he or she is located abroad shall be presumed to have...

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

    Science.gov (United States)

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

    2015-09-01

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

  9. Post-Event Volunteering Legacy: Did the London 2012 Games Induce a Sustainable Volunteer Engagement?

    Directory of Open Access Journals (Sweden)

    Niki Koutrou

    2016-11-01

    Full Text Available The hosting of the London 2012 Olympic Games was seen as an opportunity to harness the enthusiasm of the 70,000 volunteers involved and to provide a post-event volunteer legacy. A total of 77 individuals who had acted as volunteers in London 2012 were contacted approximately four years after the Games and agreed to complete a web-based open-ended survey. The participants were asked to indicate their level of current volunteering engagement and whether volunteering at the Games had an impact on their current volunteering levels. The study found that the London Olympics were the first volunteer experience for most of the volunteers who completed the survey, with the main motivation to volunteer being anything related to the Olympic Games. Just over half of the respondents are currently volunteering. Lack of time is shown to be the main barrier towards further volunteering commitment. Only half of respondents had been contacted by a volunteering scheme after London 2012. The implications of the findings for a potential volunteering legacy are then explored.

  10. Volunteer Administration Leadership Proficiency and Leadership Styles: Perceptions of Southern Region 4-H County Faculty

    Science.gov (United States)

    Stedman, Nicole L. P.; Rudd, Rick D.

    2005-01-01

    Volunteers play an integral role in supporting the mission of 4-H programs in the southern region. For this reason their proficiency in volunteer administration competence and perceived leadership style is important. The researchers sought to examine both the perceived proficiency of 4-H faculty in the southern region in seven competencies…

  11. The Work–Home Interface : Linking Work-Related Wellbeing and Volunteer Work

    NARCIS (Netherlands)

    Brauchli, Rebecca; Peeters, Maria C W; van Steenbergen, Elianne F.; Wehner, Theo; Hämmig, Oliver

    2017-01-01

    An abundance of research shows the benefits of participation in volunteer work for individuals, employers and the society as a whole. However, relatively little is known about the precursors of volunteer work. In this study, we aim to fill this gap by investigating to what extent work-related

  12. From Service to Action? Students, Volunteering and Community Action in Mid Twentieth-Century Britain

    Science.gov (United States)

    Brewis, Georgina

    2010-01-01

    Volunteering by higher education students in the UK has a long history which remains largely unexplored despite recent research and policy attention. This article offers a brief overview of the development of student volunteering before the 1960s and then discusses a shift from student social service to Student Community Action in the late 1960s…

  13. Environmental volunteer well-being: Managers' perception and actual well-being of volunteers.

    Science.gov (United States)

    Kragh, Gitte; Stafford, Rick; Curtin, Susanna; Diaz, Anita

    2016-01-01

    Background : Environmental volunteering can increase well-being, but environmental volunteer well-being has rarely been compared to participant well-being associated with other types of volunteering or nature-based activities. This paper aims to use a multidimensional approach to well-being to explore the immediately experienced and later remembered well-being of environmental volunteers and to compare this to the increased well-being of participants in other types of nature-based activities and volunteering. Furthermore, it aims to compare volunteer managers' perceptions of their volunteers' well-being with the self-reported well-being of the volunteers. Methods : Onsite surveys were conducted of practical conservation and biodiversity monitoring volunteers, as well as their control groups (walkers and fieldwork students, respectively), to measure general well-being before their nature-based activity and activity-related well-being immediately after their activity. Online surveys of current, former and potential volunteers and volunteer managers measured remembered volunteering-related well-being and managers' perceptions of their volunteers' well-being. Data were analysed based on Seligman's multidimensional PERMA ('positive emotion', 'engagement', 'positive relationship', 'meaning', 'achievement') model of well-being. Factor analysis recovered three of the five PERMA elements, 'engagement', 'relationship' and 'meaning', as well as 'negative emotion' and 'health' as factors. Results : Environmental volunteering significantly improved positive elements and significantly decreased negative elements of participants' immediate well-being, and it did so more than walking or student fieldwork. Even remembering their volunteering up to six months later, volunteers rated their volunteering-related well-being higher than volunteers rated their well-being generally in life. However, volunteering was not found to have an effect on overall mean well-being generally in life

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

    Energy Technology Data Exchange (ETDEWEB)

    Wallin, B.L. [Lawrence Berkeley Lab., CA (United States)]|[Chicago Medical School, IL (United States); Houser, A.R. [Lawrence Berkeley Lab., CA (United States); Merrill, D.W.; Selvin, S. [Lawrence Berkeley Lab., CA (United States)]|[California Univ., Berkeley, CA (United States). Dept. of Biomedical and Environmental Health Sciences

    1994-01-01

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

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

    Science.gov (United States)

    Logan, Judith R; Lieberman, David A

    2010-10-01

    Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future. Copyright © 2010 Elsevier Inc. All rights reserved.

  16. Ohio 4-H Agents' and Volunteer Leaders' Perceptions of the Volunteer Leadership Development Program.

    Science.gov (United States)

    Kwarteng, Joseph A.; And Others

    1988-01-01

    This study found that six areas of volunteer leadership development are important to volunteers and 4-H agents. The areas are (1) recruiting, (2) training, (3) motivation, (4) recognition, (5) retention, and (6) supervision. (JOW)

  17. Motivations and Benefits of Student Volunteering: Comparing Regular, Occasional, and Non-Volunteers in Five Countries

    Directory of Open Access Journals (Sweden)

    Karen Smith

    2010-01-01

    Full Text Available Programmes targeting student volunteering and service learning are part of encouraging civic behaviour amongst young people. This article reports on a large scale international survey comparing volunteering amongst tertiary students at universities in Australia, Canada, New Zealand, the United Kingdom, and the United States of America. The data revealed high rates of student volunteering and the popularity of occasional or episodic volunteering. There were strong commonalities in student volunteering behaviour, motivations and benefits across the five Western predominately English-speaking countries. Altruism and self-orientated career motivations and benefits were most important to students; however volunteering and non-volunteering students differed in the relative value they attached to volunteering for CV-enhancement and social factors.

  18. Motivations for volunteers in food rescue nutrition.

    Science.gov (United States)

    Mousa, T Y; Freeland-Graves, J H

    2017-08-01

    A variety of organizations redistribute surplus food to low-income populations through food rescue nutrition. Why volunteers participate in these charitable organizations is unclear. The aim of this study is to document the participation and motivations of volunteers who are involved specifically in food rescue nutrition. A cross-sectional study was conducted in two phases. In phase 1, a new instrument, Motivations to Volunteer Scale, was developed and validated in 40 participants (aged ≥18 years). In phase 2, the new scale and a demographics questionnaire were administered to 300 participants who were volunteering in food pantries and churches. The pilot study showed that Motivations to Volunteer Scale exhibited an internal consistency of Cronbach's α of 0.73 (P  0.05). The scale was validated also by comparison to the Volunteer Function Inventory (r = 0.86, P Motivations to Volunteer Scale were requirement, career improvement, social life, and altruism. The mean motivation score of the 300 volunteers was 9.15 ± 0.17. Greater motivations were observed among participants who were aged >45 years, women, Hispanics, college/university graduates, physically inactive, non-smokers, and had an income ≥ $48,000. The Motivations to Volunteer Scale is a valid tool to assess why individuals volunteer in food rescue nutrition. The extent of motivations of participants was relatively high, and the primary reason for volunteering was altruism. Health professionals should be encouraged to participate in food redistribution. Copyright © 2017 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

  19. LSD enhances suggestibility in healthy volunteers.

    Science.gov (United States)

    Carhart-Harris, R L; Kaelen, M; Whalley, M G; Bolstridge, M; Feilding, A; Nutt, D J

    2015-02-01

    Lysergic acid diethylamide (LSD) has a history of use as a psychotherapeutic aid in the treatment of mood disorders and addiction, and it was also explored as an enhancer of mind control. The present study sought to test the effect of LSD on suggestibility in a modern research study. Ten healthy volunteers were administered with intravenous (i.v.) LSD (40-80 μg) in a within-subject placebo-controlled design. Suggestibility and cued mental imagery were assessed using the Creative Imagination Scale (CIS) and a mental imagery test (MIT). CIS and MIT items were split into two versions (A and B), balanced for 'efficacy' (i.e. A ≈ B) and counterbalanced across conditions (i.e. 50 % completed version 'A' under LSD). The MIT and CIS were issued 110 and 140 min, respectively, post-infusion, corresponding with the peak drug effects. Volunteers gave significantly higher ratings for the CIS (p = 0.018), but not the MIT (p = 0.11), after LSD than placebo. The magnitude of suggestibility enhancement under LSD was positively correlated with trait conscientiousness measured at baseline (p = 0.0005). These results imply that the influence of suggestion is enhanced by LSD. Enhanced suggestibility under LSD may have implications for its use as an adjunct to psychotherapy, where suggestibility plays a major role. That cued imagery was unaffected by LSD implies that suggestions must be of a sufficient duration and level of detail to be enhanced by the drug. The results also imply that individuals with high trait conscientiousness are especially sensitive to the suggestibility-enhancing effects of LSD.

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

    Science.gov (United States)

    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. Volunteering and health benefits in general adults: cumulative effects and forms.

    Science.gov (United States)

    Yeung, Jerf W K; Zhang, Zhuoni; Kim, Tae Yeun

    2017-07-11

    Although the health benefits of volunteering have been well documented, no research has examined its cumulative effects according to other-oriented and self-oriented volunteering on multiple health outcomes in the general adult public. This study examined other-oriented and self-oriented volunteering in cumulative contribution to health outcomes (mental and physical health, life satisfaction, social well-being and depression). Data were drawn from the Survey of Texas Adults 2004, which contains a statewide population-based sample of adults (n = 1504). Multivariate linear regression and Wald test of parameters equivalence constraint were used to test the relationships. Both forms of volunteering were significantly related to better health outcomes (odds ratios = 3.66% to 11.11%), except the effect of self-oriented volunteering on depression. Other-oriented volunteering was found to have better health benefits than did self-volunteering. Volunteering should be promoted by public health, education and policy practitioners as a kind of healthy lifestyle, especially for the social subgroups of elders, ethnic minorities, those with little education, single people, and unemployed people, who generally have poorer health and less participation in volunteering.

  2. International clinical volunteering in Tanzania: A postcolonial analysis of a Global Health business.

    Science.gov (United States)

    Sullivan, Noelle

    2018-03-01

    This article traces how scarcities characteristic of health systems in low-income countries (LICs), and increasing popular interest in Global Health, have inadvertently contributed to the popularisation of a specific Global Health business: international clinical volunteering through private volunteer placement organisations (VPOs). VPOs market neglected health facilities as sites where foreigners can 'make a difference', regardless of their skill set. Drawing on online investigation and ethnographic research in Tanzania over four field seasons from 2011 to 2015, including qualitative interviews with 41 foreign volunteers and 90 Tanzanian health workers, this article offers a postcolonial analysis of VPO marketing and volunteer action in health facilities of LICs. Two prevalent postcolonial racialised tropes inform both VPO marketing and foreign volunteers' discourses and practices in Tanzania. The first trope discounts Tanzanian expertise in order to envision volunteers in expert roles despite lacking training, expertise, or contextual knowledge. The second trope envisions Tanzanian patients as so impoverished that insufficiently trained volunteer help is 'better than nothing at all'. These two postcolonial racialised tropes inform the conceptual work undertaken by VPO marketing schemes and foreign volunteers in order to remake Tanzanian health professionals and patients into appropriate and justifiable sites for foreign volunteer intervention.

  3. The Longitudinal Effects of Adolescent Volunteering on Secondary School Completion and Adult Volunteering

    Science.gov (United States)

    Moorfoot, Nicholas; Leung, Rachel K.; Toumbourou, John W.; Catalano, Richard F.

    2015-01-01

    This study explores the longitudinal effect of adolescent volunteering behaviour on young adult volunteering and the completion of secondary school. Utilising data from the Australian sample of the International Youth Development Study, frequency of volunteering in Grade 9 (mean age = 15 years) and in young adulthood (mean age = 21 years), and…

  4. Rare disease registries classification and characterization: a data mining approach.

    Science.gov (United States)

    Santoro, Michele; Coi, Alessio; Lipucci Di Paola, Michele; Bianucci, Anna Maria; Gainotti, Sabina; Mollo, Emanuela; Taruscio, Domenica; Vittozzi, Luciano; Bianchi, Fabrizio

    2015-01-01

    The European Commission and Patients Organizations identify rare disease registries (RDRs) as strategic instruments to develop research and improve knowledge in the field of rare diseases. Interoperability between RDRs is needed for research activities, validation of therapeutic treatments, and public health actions. Sharing and comparing information requires a uniform and standardized way of data collection, so levels of interconnection between RDRs with similar aims and/or nature of data should be identified. The objective of this study is to define a classification and characterization of RDRs in order to identify different profiles and informative needs. Exploratory statistical analyses (cluster analysis and random forest) were applied to data derived from the EPIRARE project ('Building Consensus and Synergies for the EU Rare Disease Patient Registration') survey on the activities and needs of RDRs. The cluster analysis identified 3 main typologies of RDRs: public health, clinical and genetic research, and treatment registries. The analysis of the most informative variables, identified by the random forest method, led to the characterization of 3 types of RDRs and the definition of different profiles and informative needs. These results represent a useful source of information to facilitate the harmonization and interconnection of RDRs in accordance with the different profiles identified. It could help sharing the information between RDRs with similar profiles and, whenever possible, interconnections between registries with different profiles. © 2015 S. Karger AG, Basel.

  5. Volunteer labor supply in The Netherlands

    NARCIS (Netherlands)

    van Dijk, Jouke; Boin, Ronald

    1993-01-01

    The main aim of this paper is to provide insight in the determinants of the decision to participate (yes or no) in volunteer work and the decision with regard to the number of hours spent on volunteer work. These decisions are empirically analyzed with Dutch microdata for 1982 by means of a logit

  6. Meaningful Commitment: Finding Meaning in Volunteer Work

    Science.gov (United States)

    Schnell, Tatjana; Hoof, Matthias

    2012-01-01

    This study tests the hypothesis that volunteer work is associated with various aspects of meaning making by employing a multi-dimensional model of meaning operationalized by the "Sources of Meaning and Meaning in Life Questionnaire" ("SoMe"). An empirical study comparing 168 volunteers with a representative sample of the general population (N =…

  7. Student Volunteering in England: A Critical Moment

    Science.gov (United States)

    Darwen, Jamie; Rannard, Andrea Grace

    2011-01-01

    Purpose: The purpose of this paper is to present the current state of student volunteering in English universities, and show how it contributes to some of the core activities of higher education, including teaching and learning, employability, and public engagement. The paper goes on to describe challenges currently faced by student volunteering,…

  8. Volunteer map data collection at the USGS

    Science.gov (United States)

    Eric, B. Wolf; Poore, Barbara S.; Caro, Holly K.; Matthews, Greg D.

    2011-01-01

    Since 1994, citizen volunteers have helped the U.S. Geological Survey (USGS) improve its topographic maps. Through the Earth Science Corps program, citizens were able to "adopt a quad" and collect new information and update existing map features. Until its conclusion in 2001, as many as 300 volunteers annotated paper maps which were incorporated into the USGS topographic-map revision process.

  9. Training Shelter Volunteers to Teach Dog Compliance

    Science.gov (United States)

    Howard, Veronica J.; DiGennaro Reed, Florence D.

    2014-01-01

    This study examined the degree to which training procedures influenced the integrity of behaviorally based dog training implemented by volunteers of an animal shelter. Volunteers were taught to implement discrete-trial obedience training to teach 2 skills (sit and wait) to dogs. Procedural integrity during the baseline and written instructions…

  10. Can micro-volunteering help in Africa?

    CSIR Research Space (South Africa)

    Butgereit, L

    2013-05-01

    Full Text Available Micro-volunteering has been defined as convenient, bite-sized, crowdsourced, and network-managed. Micro-volunteers donate their time and energy for organisations which they may not have previously encountered (crowd-sourced), at a time which...

  11. 4-H Volunteer Continuing Education Academy

    Science.gov (United States)

    Culp, Ken, III; Bullock, Leslie R.

    2017-01-01

    The 4-H Volunteer Continuing Education Academy was developed to provide 4-H club leaders a continuing education opportunity, to assist them in developing and enhancing the skills and knowledge necessary for their volunteer role, and to provide a means for 4-H livestock and horse club leaders to recertify. All participants reported satisfaction…

  12. Stereochemical metabolism of styrene in volunteers

    NARCIS (Netherlands)

    Wenker, M. A.; Kezić, S.; Monster, A. C.; de Wolff, F. A.

    2001-01-01

    To study the stereochemistry of styrene metabolism in volunteers, and its interindividual variability. Twenty healthy male volunteers (aged 18-37 years) were exposed to 360 mg/m3 styrene for 1 h while they performed 50 W physical exercise. Venous blood was drawn during and for up to 2 h after

  13. Volunteer Teachers' Associates as School Reformers.

    Science.gov (United States)

    Wagener, James W.

    This paper explores the role of volunteer teacher associates in school reform. Three theses are examined: (1) qualified and well trained volunteers as teachers' associates can be important in remedying the difficulties students experience in public school classrooms; (2) many public school reform efforts produce mixed results because of difficult…

  14. School Volunteers: Hidden Benefits and Hidden Costs.

    Science.gov (United States)

    Brent, Brian O.

    2001-01-01

    A survey of 68 schools shows that half of all volunteers have college degrees; most support classroom and tutoring activities. Volunteers are beneficial, despite costs associated with program administration, recruitment, interviewing, screening, orientation, training, performance assessment, motivation, recognition, record keeping, reporting,…

  15. Enhancing inclusive sports participation through volunteer coaches ...

    African Journals Online (AJOL)

    The study investigated the effectiveness of using trained volunteer coaches to improve the physical activity level of youth with and without intellectual disabilities enrolled in an inclusive programme. In total, 106 youths with and without intellectual disabilities participated in the programme. Thirty two trained volunteers served ...

  16. Self-Organized Volunteers in Rural Schools

    Science.gov (United States)

    Lu, Kun

    2008-01-01

    This paper reports some findings from a longitudinal study of a group of volunteers at an independent school in China. Founded by a committed group of volunteers, Springfield School has been self-sustaining and has provided junior high school education for the past eight years. The author describes the demographic and education background of the…

  17. Non-Alumni Advisory Board Volunteers

    Science.gov (United States)

    Nagai, Judy; Nehls, Kimberly

    2014-01-01

    Advisory boards typically offer guidance, support, social, and financial capital to academic units within colleges and universities. They are generally comprised of prominent volunteers from the community and appropriate industries or businesses. The results of this exploratory study found that non-alumni advisory board volunteers developed…

  18. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

    Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik

    2015-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... positive and negative predictive values for both university (96%/99%) and nonuniversity centers (97%/99%). CONCLUSION: WDHR-CCTR provides ongoing prospective registration of all cardiac CTs performed in Western Denmark since 2008. Overall, the registry data have a high degree of completeness and validity...

  19. Environmental volunteer well-being: Managers’ perception and actual well-being of volunteers

    Science.gov (United States)

    Kragh, Gitte; Stafford, Rick; Curtin, Susanna; Diaz, Anita

    2016-01-01

    Background: Environmental volunteering can increase well-being, but environmental volunteer well-being has rarely been compared to participant well-being associated with other types of volunteering or nature-based activities. This paper aims to use a multidimensional approach to well-being to explore the immediately experienced and later remembered well-being of environmental volunteers and to compare this to the increased well-being of participants in other types of nature-based activities and volunteering. Furthermore, it aims to compare volunteer managers’ perceptions of their volunteers’ well-being with the self-reported well-being of the volunteers. Methods: Onsite surveys were conducted of practical conservation and biodiversity monitoring volunteers, as well as their control groups (walkers and fieldwork students, respectively), to measure general well-being before their nature-based activity and activity-related well-being immediately after their activity. Online surveys of current, former and potential volunteers and volunteer managers measured remembered volunteering-related well-being and managers’ perceptions of their volunteers’ well-being. Data were analysed based on Seligman’s multidimensional PERMA (‘positive emotion’, ‘engagement’, ‘positive relationship’, ‘meaning’, ‘achievement’) model of well-being. Factor analysis recovered three of the five PERMA elements, ‘engagement’, ‘relationship’ and ‘meaning’, as well as ‘negative emotion’ and ‘health’ as factors. Results: Environmental volunteering significantly improved positive elements and significantly decreased negative elements of participants’ immediate well-being, and it did so more than walking or student fieldwork. Even remembering their volunteering up to six months later, volunteers rated their volunteering-related well-being higher than volunteers rated their well-being generally in life. However, volunteering was not found to have an

  20. Engaging Youth Ages 8 to 12 as Volunteers: An Opportunity for Youth Development?

    Directory of Open Access Journals (Sweden)

    Charlene S. Shannon

    2007-09-01

    Full Text Available Many youth programs are delivered to provide opportunities for youth to acquire the assets deemed essential to their development into caring, responsible adults. Engaging as a volunteer is considered an experience that provides access to the acquisition of key developmental assets. To date, research has focused on the positive outcomes that can result for adolescent volunteers with little attention being paid to volunteers younger than age 15. This research explored whether and in what ways being a volunteer contributed to the development of youth ages 8 to 12. Interviews were conducted with 73 Boys and Girls Club youth and seven Club Executive Directors in Atlantic Canada. Results indicated that volunteering offered youth an opportunity to serve their communities, care for its members, and feel valued. Younger youth also developed various skills and experienced enhanced self-esteem and self-confidence.

  1. Volunteer tourists' motivations for choosing homestay in the Kumasi Metropolis of Ghana

    Directory of Open Access Journals (Sweden)

    Elizabeth Agyeiwaah

    2013-01-01

    Full Text Available Volunteer tourists’ motivations for choosing homestay accommodation have received little attention from researchers. The objective of this research was to explore the push and pull factors that account for volunteer tourists’ choice of homestay in the Kumasi Metropolis of Ghana. Insights gained from this study will inure better understanding of volunteer tourists’ behaviour to ensure appropriate service delivery by homestay providers. With the help of the "Push and Pull" motivation model by Dann (1977, the findings indicated two main push factors: socio-cultural immersion and economic value; and pull factors: environmental sensitiveness and community service and development. The study found that the most important push and pull factors as perceived by volunteers to Ghana are socio-cultural immersion and environmental sensitiveness. The study confirms the supporting role of homestay for volunteer tourists to Ghana. In the end, the implications of this study are discussed.

  2. Personality Traits and Motives for Volunteering

    Directory of Open Access Journals (Sweden)

    Marija Juzbasic

    2015-07-01

    Full Text Available The aim of this study was to test the possibility of predicting volunteer motives based on five-factor model of personality in a sample of 159 volunteers from Zagreb, Osijek and Split. Data was collected using IPIP-300 personality questionnaire and Volunteer Functions Inventory. Results indicate that Croatian volunteers are agreeable, conscientious, altruistic, dutiful, and moral persons with artistic interests. Their most salient motives for volunteering are understanding and values. Hierarchical regression analysis confirmed that the five-factor model personality traits independently predict 17% of protective motive variance, 12% of values motive, 18% of career motive, 10% of understanding motive, and 12% of enhancement motive. Social motive was not explained by personality traits.

  3. RHEUMATOID ARTHRITIS IN THE RUSSIAN FEDERATION ACCORDING TO RUSSIAN ARTHRITIS REGISTRY DATA (COMMUNICATION I

    Directory of Open Access Journals (Sweden)

    E. L. Nasonov

    2016-01-01

    Full Text Available The paper presents the materials of the Russian Arthritis Registry (OREL that includes 3276 patients from 11 Russian Federation's largest research-and-practical centers situated in Moscow, Saint Petersburg, Novosibirsk, Kazan, Tula, Yaroslavl, Tyumen. It discusses the main goals of setting up registries, compares the results of an analysis of the data available in the Russian Registry OREL and registries of European countries and the USA. The findings suggest that there is non-uniform information on clinical, laboratory, and instrumental parameters in the national registers of a number of European countries and the USA. According to its basic characteristics, the Russian Registry OREL compares favorably with a number of other registries in the completeness of data collection, which allows a general idea of rheumatoidarthritis (RA patients in Russia. For further development of the OREL Registry, it is necessary to concentrate our attention on the following main areas: to improve the quality of filling out documents; to follow-up patients receiving different RA therapy regimens according to the guidelines of the Association of Rheumatologists of Russia for the treatment of RA; to conduct in-depth studies of comorbidity, primarily depressive disorders; to analyze adverse reactions that make RA therapy difficult; to actively use modules for patients' self-rating of their condition; to develop nursing care, etc.

  4. Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies.

    Science.gov (United States)

    Loane, Maria; Dolk, Helen; Garne, Ester; Greenlees, Ruth

    2011-03-01

    The European Surveillance of Congenital Anomalies (EUROCAT) network of population-based congenital anomaly registries is an important source of epidemiologic information on congenital anomalies in Europe covering live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for fetal anomaly. EUROCAT's policy is to strive for high-quality data, while ensuring consistency and transparency across all member registries. A set of 30 data quality indicators (DQIs) was developed to assess five key elements of data quality: completeness of case ascertainment, accuracy of diagnosis, completeness of information on EUROCAT variables, timeliness of data transmission, and availability of population denominator information. This article describes each of the individual DQIs and presents the output for each registry as well as the EUROCAT (unweighted) average, for 29 full member registries for 2004-2008. This information is also available on the EUROCAT website for previous years. The EUROCAT DQIs allow registries to evaluate their performance in relation to other registries and allows appropriate interpretations to be made of the data collected. The DQIs provide direction for improving data collection and ascertainment, and they allow annual assessment for monitoring continuous improvement. The DQI are constantly reviewed and refined to best document registry procedures and processes regarding data collection, to ensure appropriateness of DQI, and to ensure transparency so that the data collected can make a substantial and useful contribution to epidemiologic research on congenital anomalies. Copyright © 2011 Wiley-Liss, Inc.

  5. Grassroots volunteers in context: rewarding and adverse experiences of local women working on HIV and AIDS in Kilimanjaro, Tanzania.

    Science.gov (United States)

    Corbin, J Hope; Mittelmark, Maurice B; Lie, Gro T

    2016-09-01

    Many nongovernmental organizations in Africa rely on grassroots volunteers to provide critical health services. Considering context and the interplay of individual, organizational, and societal influences on the experience of volunteers, this paper addresses three questions: What do grassroots volunteers contribute? What organizational processes promote volunteer engagement? What are the positive and negative consequences of volunteering? Eighteen members and staff of the Tanzanian HIV and AIDS NGO, KIWAKKUKI, were selected from 6000+ women volunteers to be interviewed. The interviews were recorded, transcribed, and analyzed for themes. Within KIWAKKUKI, volunteers contributed time and local knowledge, leading to an indigenous educational approach building on local norms and customs. Volunteers' engagement was motivated by the desire to support family members, reverse stigma, and work/socialize with other women. Benefits to volunteers included skills acquisition and community recognition; yet some volunteers also reported negative experiences including burnout, conferred stigma, and domestic violence. Positive organizational processes built on cultural practices such as collective decision-making and singing. The findings point to important considerations about context, including the synergistic effect training can have on local traditions of caring, complications of gender inequity, and how community health planning processes may need to be modified in extremely poor settings. This research also suggests good utility of the research framework (the Bergen Model of Collaborative Functioning) that was used to analyze volunteer engagement for service delivery in sub-Saharan contexts. © The Author(s) 2015.

  6. 77 FR 42317 - Establish a Patient-Based Registry To Evaluate the Association of Gadolinium Based Contrast...

    Science.gov (United States)

    2012-07-18

    ... Quality Assurance (QA) registry of patients with renal failure who received GBCAs as the basis for a... of the development of a patient-based registry to evaluate the association of gadolinium based..., and a copy to Ira Krefting, Center for Drug Evaluation and Research, Division of Medical Imaging...

  7. Validation of defibrillator lead performance registry data

    DEFF Research Database (Denmark)

    Kristensen, Anders Elgaard; Larsen, Jacob Moesgaard; Nielsen, Jens Cosedis

    2017-01-01

    intervention. The validity of the less detailed overall reasons for lead interventions commonly used to report lead performance is also excellent. These findings indicate high registry data quality appropriate for scientific analysis and industry-independent post-marketing surveillance........9% (95% CI: 85.2-90.2%) with a κ value of 0.82 (95% CI:0.78-0.86) representing an almost perfect match. CONCLUSION: The validity of data on defibrillator lead performance recorded in the DPIR is excellent for the specific types of lead intervention and good for the specific reasons for defibrillator lead......AIMS: The validity of registry data on defibrillator lead performance is described only sparsely, despite its clinical importance. This study investigated the validity of defibrillator lead performance registry data in a nationwide and population-based registry. METHODS AND RESULTS: We identified...

  8. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  9. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  10. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  11. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  12. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  13. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  14. EPA Linked Open Data: Substance Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — Substance Registry Services (SRS) is the Environmental Protection Agency's (EPA) central system for information about substances that are tracked or regulated by EPA...

  15. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  16. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...

  17. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  18. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  19. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  1. Registries Help Moms Measure Medication Risks

    Science.gov (United States)

    ... Home For Consumers Consumer Updates Registries Help Inform Medication Use in Pregnancy Share Tweet Linkedin Pin it ... or epilepsy, pregnant women must often take prescription medication. Studies show that most women take at least ...

  2. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...

  3. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...

  5. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...

  6. Linking Medicare, Medicaid, and Cancer Registry Data...

    Data.gov (United States)

    U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

  7. Assessing Ontario's Personal Support Worker Registry

    Directory of Open Access Journals (Sweden)

    Audrey Laporte

    2013-08-01

    Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.

  8. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...

  9. Airborne Hazards and Open Burn Pit Registry

    Science.gov (United States)

    ... problem if you are in a high security environment where this is disabled by a network policy. The Registry will work in JavaScript-enabled browsers such as: Google Chrome 17+ Mozilla Firefox 12+ Internet Explorer 10+ ...

  10. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  11. EPA Linked Open Data: Facility Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) identifies facilities, sites, or places subject to environmental regulation or of environmental interest to EPA programs or...

  12. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  13. Development of the SIOPE DIPG network, registry and imaging repository

    DEFF Research Database (Denmark)

    Veldhuijzen van Zanten, Sophie E M; Baugh, Joshua; Chaney, Brooklyn

    2017-01-01

    , to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG...... was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence...... research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG....

  14. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

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

  15. Definition, epidemiology and registries of pulmonary hypertension.

    Science.gov (United States)

    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.

  16. Design and development of an Internet registry for congenital heart defects.

    Science.gov (United States)

    Mitri, Wajeeh; Sandridge, Amy L; Subhani, Shazia; Greer, William

    2002-02-01

    Congenital Heart Defects (CHD) are conditions that encompass more than 50 diagnoses and are due to developmental abnormalities early in fetal life. The King Faisal Specialist Hospital and Research Centre in the Kingdom of Saudi Arabia treats approximately 100 new cases per month. We recently developed a new CHD Registry that captures, stores and processes our data via the Internet. The Registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages and Microsoft Structured Query Language (SQL). Details of CHD cases are captured in a World Wide Web (WWW) Registry, permitting any browser-enabled PC or Mac to participate fully in all registry functions, including data-entry, viewing, editing, searching, reporting, validating, charting, and exporting data subsets to statistics packages. It includes "administrative" features and an active security system. The paper forms have been designed to reflect the "look and feel" of the Web pages. Automatic validation procedures are also included. Our Registry has been in operation for 3 years. It serves 10 PCs and contains more than 3,000 registered cases of CHD. It is the first CHD Registry to be fully functional on the Internet. It is also the first dedicated CHD registry, and the first to routinely report on the full spectrum of CHD diagnoses. The WWW offers several logistical advantages to disease registries, especially those that represent large regions. It also offers the possibility of sharing resources between registries, facilitating the aggregation and analysis of disease data on a world-wide scale. This is useful for rare diseases such as CHD (see http://rc.kfshrc.edu.sa/chdr/demo/). Copyright 2002 Wiley-Liss, Inc.

  17. Volunteering as a determinant of civil society

    Directory of Open Access Journals (Sweden)

    A. V. Matiychyk

    2016-06-01

    Another prerequisite of volunteerism was the surge of Advantages Revolution in 2013-2014, and after it – the anti-terrorist operation in eastern Ukraine. In 2015 the aid organization in terms of ATO and internally displaced persons has increased directions volunteering. Important indicators of volunteering were high levels of involvement of Ukrainian philanthropy and consequently public confidence in voluntary organizations, qualitative growth of volunteerism, the founders of which were gradually included among the managerial elite Ukraine. At the same time, there are number of problems that discredit the work of volunteers and the idea of volunteering in general, for example, fraud volunteers and fake organizations. Moreover, the increased activity of the volunteer movement was caused by the internal crisis that led to the imbalance of public administration, lack of high-quality management decisions, lack of resource capabilities. Also it was caused by external factors, such as the need to participate in the organization of international events and conduct military operations against separatist groups in eastern Ukraine. So, volunteer activity gradually becomes an effective mechanism of self-organization of citizens.

  18. Motivation to volunteer among senior center participants.

    Science.gov (United States)

    Pardasani, Manoj

    2018-04-01

    Senior centers in the United States play a vital role in the aging continuum of care as the focal points of a community-based system of services targeting independent older adults to promote their social integration and civically engagement. Although several studies have evaluated the diversity of senior center programs, demographic characteristics of participants, and benefits of participation, very few have explored motivations to volunteer among participants. Many senior centers rely on a cadre of participants who volunteer there to assist with programs and meal services. However, a systematic examination of volunteering interests and the rationale for volunteering among senior center participants has been missing from the literature. This mixed-methods study, conducted at a large suburban senior center, explores the interests and motivations of volunteerism among the participants. The study found that there was limited interest in volunteering among senior center participants. Those who were motivated to volunteer wanted to do so in order to stay connected with their community. There was strong interest in volunteering for single events or projects rather than a long-term commitment. Implications for senior centers are discussed.

  19. The National Anesthesia Clinical Outcomes Registry.

    Science.gov (United States)

    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.

  20. Accuracy of child growth-monitoring weights obtained by commune volunteers in Phu Tho Province, Vietnam.

    Science.gov (United States)

    Huong, Van Thuy; Thach, Tran Duc; Tuan, Tran; Ha, Tran Thu; Marsh, David R

    2006-03-01

    Weight-for-age is a commonly used indicator of the health of children and communities. We determined the accuracy of health volunteers' weight measurements in a nutrition project in Vietnam. To report the accuracy of the volunteers' weight measurements and to assess the likely effect of any inaccuracies. Save the Children /USA trained health volunteers to weigh children (6-36 months old) every other month from December 1999 to August 2000. Trained researchers randomly rechecked 257 weights (range, 24-114 per session). We computed nondirectional and directional differences between the weights measured by volunteers and those measured by researchers. The weights recorded by volunteers were lower than those recorded by researchers by an average of 30 g (p first weighing session, at which the average weight recorded by volunteers was 280 g below that recorded by researchers (p = .01). The error at subsequent weighings was minimal (bias. Perhaps some communities (or families) influenced the volunteers to report weights lower than those actually observed to justify the programmatic food supplements or to give the impression at subsequent weighings that the level of malnutrition had been successfully reduced from that at the first session. Careful supervision of measurements of weight at baseline is essential.

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

    Science.gov (United States)

    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…

  2. Review of U.S. registries for psoriasis.

    Science.gov (United States)

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

    2017-12-01

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

  3. 20 CFR 10.731 - What is the pay rate of Peace Corps volunteers and volunteer leaders for compensation purposes?

    Science.gov (United States)

    2010-04-01

    ... 20 Employees' Benefits 1 2010-04-01 2010-04-01 false What is the pay rate of Peace Corps volunteers and volunteer leaders for compensation purposes? 10.731 Section 10.731 Employees' Benefits OFFICE... Volunteers § 10.731 What is the pay rate of Peace Corps volunteers and volunteer leaders for compensation...

  4. Roman cadastres, land registers and instrumentum venditionis: The elements of modern land registries

    Directory of Open Access Journals (Sweden)

    Sič Magdolna

    2013-01-01

    Full Text Available The reason for this research is the opinion of Civilists that Roman law did not make any contribution in the area of lend recording. It is true that during the Roman history registration was not a necessary condition of acquiring ownership, as was the case in the German system of land registers, neither did Roman law contain all the principles of modern land registers. Nevertheless, it cannot be claimed that the modern land registry system is completely original. Elements of modern land registries existed already in Roman times. These were: the cadastres, the public (censor's books and the requirement for written documents in transactions related to immovable property, especially in sales contract. It is not easy to reconstruct the elements of modern land registries in ancient Rome as available sources are in fragments; however there is sufficient basis to claim that modern land registries have their predecessor in Roman law.

  5. The quality of volunteers' motives: Integrating the functional approach and self-determination theory.

    Science.gov (United States)

    Güntert, Stefan Tomas; Strubel, Isabel Theresia; Kals, Elisabeth; Wehner, Theo

    2016-01-01

    Volunteers' motives have been differentially linked to various aspects of successful volunteering. Using self-determination theory, we propose that volunteer functions are systematically related to the experience of self-determined versus controlled motivation. This "quality of motivation," in turn, explains why motives are differentially associated with satisfaction. We conducted two studies: Study 1 (N1 = 824) addressed motives, quality of motivation, and satisfaction; Study 2 (N2 = 323) additionally examined function-specific benefits and the extent to which they match volunteers' motives. Overall, our hypotheses were supported: values, understanding, and social justice motives were positively associated with relatively self-determined motivation (RSM), whereas career, social, protective, and enhancement motives showed negative correlations. The relationships between motives and satisfaction were partially mediated by RSM. Concerning benefits, Study 2 corroborated these findings for values, protective, enhancement, and social justice. This research introduces a new perspective on the quality of volunteers' motives-with theoretical and practical implications.

  6. 5 CFR 315.605 - Appointment of former ACTION volunteers.

    Science.gov (United States)

    2010-01-01

    ... full-time community volunteer (including criminal justice volunteer, volunteer in justice, and VET... institution of higher learning; or (3) In another activity which, in the agency's view, warrants extension. (c...

  7. CORPORATE VOLUNTEERING AS AN ELEMENT OF SUSTAINABLE DEVELOPMENT OF THE ORGANIZATION

    Directory of Open Access Journals (Sweden)

    Natalia Ivanovna Gorlova

    2018-01-01

    Full Text Available Purpose. The article is devoted to the topic of development of corporate volunteering, which is topical for Russian society. The subject of the analysis is corporate volunteering in Russia and its impact on the sustainable development of the organization. Corporate volunteering is seen at the intersection of the interests of the company, employees and the local community. The aim of the research is a theoretical analysis of modern practices of corporate volunteer activity as a factor of sustainable development of the organization. Methodology. Within the framework of the article, using the method of comparison and grouping, we analyzed and studied the materials of the latest international and Russian studies based on expert opinions from business, government, civil society on this phenomenon. Results. The results of the work consist in the fact that the authors grouped and summarized the motivational attitudes of participants in the corporate volunteer movement, presented practical recommendations on the formation of a system for supporting corporate volunteering, and showed the relationship between the organization’s sustainable development and corporate volunteering. Practical implications. The practical significance of the study is that its conclusions and recommendations can be used in the organization of corporate volunteering in Russian companies.

  8. Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom

    Science.gov (United States)

    Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila

    2014-01-01

    Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743

  9. Volunteering and Cardiovascular Disease Risk: Does Helping Others Get "Under the Skin?".

    Science.gov (United States)

    Burr, Jeffrey A; Han, Sae Hwang; Tavares, Jane L

    2016-10-01

    This study investigated whether volunteering was related to 5 risk factors for cardiovascular disease (CVD) and the metabolic syndrome (MetS) among middle-aged and older adults. Data from the 2004 and 2006 waves of the Health and Retirement Study (N = 7,803) were examined. Logistic regression was used to describe the relationships among volunteering and central adiposity, hypertension, lipid dysregulation, elevated blood glucose levels, and high inflammation, along with 2 indexes of the MetS. Among middle-aged adults, results showed that volunteers were less likely to have high central adiposity, lipid dysregulation, elevated blood glucose levels, and MetS compared with non-volunteers. For older adults, results showed volunteers were less likely to be hypertensive and more likely to have lipid dysregulation than their non-volunteer counterparts. These results supported findings from other studies that formal volunteering is beneficial for middle-aged adults, and to a lesser degree, older adults. Further research is required to determine what factors may mediate the volunteer-CVD risk relationships. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. Irradiation of volunteers in nuclear medicine

    International Nuclear Information System (INIS)

    Huda, W.; Scrimger, J.W.

    1989-01-01

    The preliminary assessment of many radiopharmaceuticals is often carried out with the help of normal volunteers. These volunteers are drawn from the general public, are fully informed of the procedure to be performed and its attendant risks, and in many cases are compensated financially for their trouble. The cooperation of such people is of vital importance to the full understanding of the normal kinetics and metabolism of many new radiopharmaceuticals. The restrictions on the choice of normal volunteers, and the radiation dose limits which must be observed are not explicitly defined in any of the current guidelines, and in this paper we propose a rationale, based upon available information, which sets acceptable limits for volunteers, and provides a framework within which scientists and physicians can work

  11. A Zen Approach to Volunteer Management.

    Science.gov (United States)

    Barnett, Michael L.; Cahill, Gloria

    2002-01-01

    New York University's Zen approach to community service focuses on the principles of mindfulness, awareness, compassion, and engagement in the present moment. It enables a more holistic approach to the measurement of volunteer management objectives. (SK)

  12. The hospice volunteer: a person of hospitality.

    Science.gov (United States)

    Welk, T A

    1992-01-01

    Volunteers are integral members of the hospice interdisciplinary team. They are distinguished from other members of the team only by role, not by expectation. The distinction is not between "volunteer" and "professional," because every team member is to be professional in the best sense of that word. If a distinction is to be made, it is that some hospice staff members are salaried while others donate their services. Volunteer staff members are expected to be as responsible and accountable as every other member of the team. ALL staff members must realize the importance of taking care of personal needs in order to be able to care for others. Even though the following article deals primarily with the volunteer hospice staff member, the points outlined can just as easily be applied to the salaried staff member.

  13. Planning Educational Volunteer Forums: Steps to Success.

    Science.gov (United States)

    Culp, Ken III

    2000-01-01

    Five steps that can help ensure the success of workshops, conferences, or forums for extension volunteers: constructing the steering/planning committee; contracting facilities; planning the program; arranging for food, meals, and catering; and developing the budget. (SK)

  14. 77 FR 22177 - National Volunteer Week, 2012

    Science.gov (United States)

    2012-04-12

    ...--National Former Prisoner of War Recognition Day, 2012 #0; #0; #0; Presidential Documents #0; #0; #0;#0...-class education for every child to an economy built to last. During National Volunteer Week, we pay...

  15. The long term effects of early analysis of a trauma registry

    Directory of Open Access Journals (Sweden)

    Ashour Mazen

    2009-01-01

    Full Text Available Abstract Background We established a trauma registry in 2003 to collect data on trauma patients, which is a major cause of death in the United Arab Emirates (UAE. The aim of this paper is to report on the long term effects of our early analysis of this registry. Methods Data in the early stages of this trauma registry were collected for 503 patients during a period of 6 months in 2003. Data was collected on a paper form and then entered into the trauma registry using a self-developed Access database. Descriptive analysis was performed. Results Most were males (87%, the mean age (SD was 30.5 (14.9. UAE citizens formed 18.5%. Road traffic collisions caused an overwhelming 34.2% of injuries with 29.7% of those involving UAE citizens while work-related injuries were 26.2%. The early analysis of this registry had two major impacts. Firstly, the alarmingly high rate of UAE nationals in road traffic collisions standardized to the population led to major concerns and to the development of a specialized road traffic collision registry three years later. Second, the equally alarming high rate of work-related injuries led to collaboration with a Preventive Medicine team who helped with refining data elements of the trauma registry to include data important for research in trauma prevention. Conclusion Analysis of a trauma registry as early as six months can lead to useful information which has long term effects on the progress of trauma research and prevention.

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

    Science.gov (United States)

    Lindoerfer, Doris; Mansmann, Ulrich

    2017-07-01

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

  17. Semantic Similarity Assessment of Volunteered Geographic Information

    Directory of Open Access Journals (Sweden)

    Maythm M. Albakri

    2017-01-01

    Full Text Available The recent development in communication technologies between individuals allows for the establishment of more informal collaborative map data projects which are called volunteered geographic information (VGI. These projects, such as OpenStreetMap (OSM project, seek to create free alternative maps which let users add or input new materials to the data of others. The information of different VGI data sources is often not compliant to any standard and each organization is producing a dataset at various level of richness. In this research the assessment of semantic data quality provided by web sources, e.g. OSM will depend on a comparison with the information from standard sources. This will include the validity of semantic accuracy as one of the most important parameter of spatial data quality parameters. Semantic similarity testing covered feature classification, in effect comparing possible categories (legend classes and actual attributes attached to features. This will be achieved by developing a tool, using Matlab programming language, for analysing and examining OSM semantic accuracy. To identify the strength of semantic accuracy assessment strategy, there are many factors should be considered. For instance, the confusion matrix of feature classifications can be assessed, and different statistical tests should be passed. The results revealed good semantic accuracy of OSM datasets.

  18. Options of recognizing volunteers in non-profit organizations

    OpenAIRE

    KŘENKOVÁ, Eva

    2011-01-01

    Bachelor thesis deals with the possibilities of evaluating volunteers in nonprofit organizations. Presents basic concepts related to volunteering, issues relating to the performance of volunteer work in the Czech Republic and abroad, such as the current Czech law on voluntary service, International year of volunteering, European voluntary service or monetary quantification of volunteer work. Main Chapter is a list of options, how can nonprofit organizations motivate their volunteers and evalu...

  19. Holding on to what you have got: keeping hospice palliative care volunteers volunteering.

    Science.gov (United States)

    Claxton-Oldfield, Stephen; Jones, Richard

    2013-08-01

    In all, 119 hospice palliative care volunteers from 3 community-based hospice programs completed the Volunteer Retention Questionnaire (VRQ), a 33-item survey designed for this study. The VRQ asks volunteers to rate the importance of each item to their decision to continue volunteering. The items that received the highest mean importance ratings included enjoying the work they do, feeling adequately prepared/trained to perform their role, and learning from their patients' experiences/listening to their patients' life stories. Being recognized (eg, pins for years of service or being profiled in the hospice newsletter), receiving phone calls/cards from their volunteer coordinator on special occasions, and being reimbursed for out-of-pocket expenses were among the items that received the lowest mean importance ratings. Suggestions for improving volunteer retention are provided.

  20. Volunteers and Ex-Volunteers: Paths to Civic Engagement Through Volunteerism Voluntarios y Ex Voluntarios: Perfiles de Participación Ciudadana a Través del Voluntariado

    OpenAIRE

    Elena Marta; Maura Pozzi; Daniela Marzana

    2010-01-01

    The study described is part of a broader longitudinal and multi-methodological research project aimed at investigating volunteerism in young people, in order to understand the reasons for the initial choice to volunteer but, more specifically, the reasons to sustain or quit voluntary involvement, as well as the effects of volunteerism. Eighteen volunteers and 18 ex-volunteers, 50% male and 50% female, aged between 22 and 29 years old, from 2 regions in northern Italy (Lombardy and Emilia Roma...

  1. The National Mental Health Registry (NMHR).

    Science.gov (United States)

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

    2008-09-01

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

  2. ISHKS joint registry: A preliminary report

    Directory of Open Access Journals (Sweden)

    Jawahir A Pachore

    2013-01-01

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

  3. The Pan African Clinical Trials Registry: year one data analysis of the only African member of the World Health Organization Network of Primary Registries.

    Science.gov (United States)

    Abrams, Amber; Siegfried, Nandi

    2010-11-01

    Prospective registration in a clinical trial registry is mandatory for all clinical trial research intended for publication in any International Committee of Medical Journal Editors member journal. With the launch of the Pan African Clinical Trial Registry (PACTR) in September 2009, the first African member of the World Health Organization (WHO) Network of Primary Registers came into being as the only registry dedicated specifically to trials on the African continent. To examine the usefulness of PACTR as a resource for information on clinical trial activity in Africa, and to provide data on the African clinical trial landscape after the first year of a dedicated registry. Data was extracted from PACTR on 18 August 2010 on diseases investigated, intervention types, trial locations, principal investigator locations, and registration dates. Clinical trial registration is steadily increasing throughout the region, and there is evidence that the dedicated assistance of staff can facilitate further trial registration. An analysis of the country of origin of principal investigators shows that clinical trial work is increasingly being generated within the continent. Although the registry is in a nascent stage, its value as a resource can already be seen; by extracting data from the registry we can identify what trial work is being conducted in the region, where, and by whom, shedding light on the present trial landscape on the continent. PACTR is committed to increasing trial registration and awareness of the importance of registration, while also helping to harmonize national registry efforts across the African continent. © 2010 Blackwell Publishing Asia Pty Ltd and Chinese Cochrane Center, West China Hospital of Sichuan University.

  4. Healthy Volunteer 2020: Comparing Peace Corps Volunteers' health metrics with Healthy People 2020 national objectives

    Directory of Open Access Journals (Sweden)

    Susan J. Henderson

    2016-12-01

    Full Text Available Healthy People 2020 (HP2020 provides a set of quantifiable objectives for improving the health and well-being of Americans. This study examines Peace Corps Volunteers' health metrics in comparison with the Leading Health Indicators (LHIs in order to set baseline measures for Volunteers' health care and align our measurements with Healthy People 2020 standards. Health data from multiple internal Peace Corps datasets were compared with relevant LHIs and analyzed using descriptive statistics. Seventeen (65% of the 26 LHIs were relevant to Peace Corps Volunteers. Of these, Volunteers' health measures met or were more favorable than the goals of 13 (76% of the LHIs. There were no data available for 4 (24% of the LHIs. The entire Volunteer population has full access to primary care, oral health, and reproductive health services. No suicides or homicides were reported among Volunteers during the analyzed time period. Utilizing the LHIs, we have identified high-priority public health issues relevant for the Peace Corps Volunteer population. We discuss the need for quality data to measure and monitor Volunteers' health progress and outcomes over time, and also to standardize our measurements with Healthy People 2020 benchmarks. This framework may foster greater collaboration to engage in health promotion and disease prevention activities driven by evidence-based information, which may, in turn, encourage healthy behavior among Volunteers.

  5. The relationship between personal traits and job satisfaction among Taiwanese community health volunteers.

    Science.gov (United States)

    Lin, Mei-Chih; Li, I-chuan; Lin, Kuan-chia

    2007-06-01

    The purpose of the study was to understand the relationship between job satisfaction and personal traits in health volunteers in one community in Taiwan. Among different kinds of community resources, the human resource is most essential for the process of developing healthy communities and cities. However, it is not easy to keep voluntary workers as part of health programmes even though they have been trained. Previous research has shown that to increase the job satisfaction of such a person, the volunteer needs to improve effectively his/her need to achieve. The need to achieve is an important part of a person's personal traits. A cross-sectional survey design was used to interview 317 health volunteers in various community health centres in I-lan county, northern Taiwan. The research instruments of this study included the 'locus of control orientation scale' for personality measurement, the 'achievement orientation scale' and the 'job satisfaction scale'. Most of the sample volunteers were female with an average age of 49.55 years; the majority was married and living with their spouses. In terms of the volunteers' personal traits, most of them are internal control orientation. The job satisfaction of the volunteers who took part in this research was extremely high. Significant variables correlating with job satisfaction in this study were gender, educational level, religious preference, participation in training, working to promote community health, the willingness to work, the frequency of participating in job training, and cooperation with other volunteer partners. The explainable variance for the prediction of job satisfaction from a combination of achievement orientation and the frequency of collaboration with other people was 9.1%. The results suggest that there is a need to strengthen cooperative relationships among volunteer by initiating well-planned volunteer training programmes and growth groups with the aim of enhancing their interpersonal

  6. Is volunteering in later life impeded or stimulated by other activities?

    Science.gov (United States)

    Dury, Sarah; De Donder, Liesbeth; De Witte, Nico; Brosens, Dorien; Smetcoren, An-Sofie; Van Regenmortel, Sofie; Verté, Dominique

    2016-01-01

    Volunteering among older adults has received increasing attention from researchers, policy makers, and associations. However, there remains a lack of knowledge in how volunteering is impacted by other activities in the lives of older adults. In order to understand activity engagement in later life, insights into the extent to which activities compete with or complement each other are necessary. Data for the present research were derived from the Belgian Aging Studies (N = 23,768). The main objective is to uncover the activities that impede or stimulate actual volunteering and/or the likeliness to volunteer at an older age. Structural equation models indicate a strong positive correlation between altruistic types of activities and actual volunteering. Furthermore, older adults active in personal leisure activities are more drawn to be potential volunteers. The article demonstrates that the activity level of older people is not sufficient to understand volunteering, that is, a distinction between the types of activities is essential. © The Author(s) 2015.

  7. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten

    2016-01-01

    AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...

  8. Design and Early Experience With a Real-World Surgical Registry.

    Science.gov (United States)

    Weber LeBrun, Emily E; Lynch, Lauren D; Peterson, Hanna V; Pena, Savannah Rose; Ruder, Kara; Vasilopoulos, Terrie

    2017-07-10

    We describe the rationale, design, and methods and 6-year experience with a real-world surgical registry for female pelvic reconstructive and incontinence procedures and postoperative outcomes. The primary goal of creating this registry was to establish the feasibility of prospective data capture for all urogynecologic procedures. Data captured included baseline demographics, surgical procedures, perioperative complications, and subjective and objective findings up to 36 months after surgery. The Pelvic Reconstruction and Incontinence Surgery ± Mesh Registry was developed over 3 years to include 194 unique variables for prospective data capture. The registry was implemented in December 2010, and data from 924 separate case events from a single surgeon were recorded, comprising 100% surgical case capture. Cases included a variety of procedures representing a comprehensive urogynecology practice on 804 unique patients. Patients who were asked to participate in long-term follow-up (n = 299) returned with attendance of 96% at 6 weeks, 64% at 6 months, 51% at 12 months, 39% at 24 months, and 22% at 36 months. The Pelvic Reconstruction and Incontinence Surgery ± Mesh Registry effectively captured all urogynecologic procedures for the purpose of quality improvement. This real-world tool demonstrates that 100% case capture is feasible and provides valuable information for the highly motivated surgeon, although adequate long-term follow-up is limited. Additional research is needed to better understand the role of surgical registries for quality improvement and development of patient-centered strategies to increase long-term follow-up.

  9. Quality Registries in Sweden, Healthcare Improvements and Elderly Persons with Cognitive Impairments.

    Science.gov (United States)

    Mattsson, Titti

    2016-12-01

    Policy-makers, the medical industry and researchers are demonstrating a keen interest in the potential of large registries of patient data, both nationally and internationally. The registries offer promising ways to measure and develop operational quality within health and medical care services. As a result of certain favourable patient data regulations and government funding, the development of quality registries is advanced in Sweden. The combination of increasing demand for more cost-efficient healthcare that can accommodate the demographic development of a rapidly ageing population, and the emergence of eHealth with an increasing digitalisation of patient data, calls attention to quality registries as a possible way for healthcare improvements. However, even if the use of registries has many advantages, there are some drawbacks from a patient privacy point of view. This article aims to analyse this growing interdependence of quality registries for the healthcare sector. It discusses some lessons from the Swedish case, with particular focus on the collection of data from elderly persons with cognitive impairments.

  10. [A perspective for the role of drug registries in the post-marketing surveillance].

    Science.gov (United States)

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

    2013-06-01

    Drug registries are implemented after the authorization of new products and represent a tool for systematic collection of data aimed at obtaining additional knowledge on appropriateness, effectiveness and safety. The design of registries needs to be coherent with the main objective and a study protocol is required before the implementation. A registry aimed at the appropriateness of drug use should be primarily considered for high cost drugs when there is a risk, either for the patients' safety or for public expenditure, in using the drug outside the approved indications. Since the registry is a condition for the access to drugs, and all users are included, an extremely simplified data collection is required. However, the data should be available at regional level to allow record linkage procedures with other databases for conducting outcome studies. When registries are aimed at acquiring new information on the risk profile, the duration and the regional extension of data collection should be coherent with the expected incidence of events of interest. A great attention should be devoted in preventing that patients are lost to follow-up, since the reasons for being lost are frequently associated with harmful outcomes, such as adverse drug reactions. In a registry focused on effectiveness, the main aim consists in ascertaining the reasons (the prognostic factors), for possible discrepancies between premarketing studies and clinical practice. Taking into account the greater incidence of the expected events, there are fewer reasons for extending data collection to all users, whereas the main attention should focus on quality controls and the ascertainment of confounding factors. Given the relevance of the validity issues, in the set out of a registry it is important to think about ad hoc resources and the adequacy of infrastructures. As for any epidemiological study, an adequate qualification of the researcher/clinician in charge of conducting a registry should be

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

    Science.gov (United States)

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

    2017-09-29

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

  12. A questionnaire study of Voluntary Service Overseas (VSO) volunteers: health risk and problems encountered.

    Science.gov (United States)

    Bhatta, Prakash; Simkhada, Padam; van Teijlingen, Edwin; Maybin, Susanna

    2009-01-01

    Every year several hundred Voluntary Service Overseas (VSO) volunteers are placed in developing countries where they live and work among the local population. This study analyzes the risk and problems encountered by VSO volunteers overseas. Information was collected from 219 returned VSO volunteers (out of 609; response rate 36%) recruited in the United Kingdom, using a self-administered questionnaire. During the period April 2006 to March 2007 volunteers were given a questionnaire by the VSO medical unit in London with a return envelope. Diarrhea was the most prevalent problem (79.9%), especially for the younger volunteers. Skin and dental problems were next most prevalent. More than one in six had experienced accidents and nearly one-fourth acts of aggression (including verbal) or violence. Most (87.5%) lived in regions with mosquito-borne diseases, 11.6% of these had smear positive malaria. Of all volunteers, 11.0% had placed themselves at risk of HIV and sexually transmitted infections (STIs). Unprotected sexual intercourse (45.0%) and split condoms (30.0%) were the main sexual health risk factors. Just over one-fourth of volunteers reported ongoing medical/psychological problems on return, the most common being diarrhea (25.0%), skin disease (15.4%), gynecological problems (13.5%), and injuries (9.6%). Volunteers experience a range of health problems during and after their placement in the developing world. Our study shows the importance of (1) predeparture health preparation of volunteers and (2) medical care and advice for volunteers. This advice is also important for travelers in similar conditions such as those visiting relatives, long-term backpackers, and students working in or traveling to developing countries. Further research is needed to help explain some of the findings and study ways of preventing accidents and illness.

  13. Transformative experiences for Hurricanes Katrina and Rita disaster volunteers.

    Science.gov (United States)

    Clukey, Lory

    2010-07-01

    The massive destruction caused by Hurricanes Katrina and Rita in 2005 provided an opportunity for many volunteers to be involved with disaster relief work. Exposure to devastation and personal trauma can have long-lasting and sometimes detrimental effects on people providing help. This qualitative study explored the experience of volunteer relief workers who provided disaster relief services after the hurricanes. Three major themes emerged: emotional reactions that included feelings of shock, fatigue, anger and grief as well as sleep disturbances; frustration with leadership; and life-changing personal transformation. Stress reactions were noted but appeared to be mitigated by feelings of compassion for the victims and personal satisfaction in being able to provide assistance. Suggestions are provided for further research.

  14. Proving Value in Radiology: Experience Developing and Implementing a Shareable Open Source Registry Platform Driven by Radiology Workflow.

    Science.gov (United States)

    Gichoya, Judy Wawira; Kohli, Marc D; Haste, Paul; Abigail, Elizabeth Mills; Johnson, Matthew S

    2017-10-01

    Numerous initiatives are in place to support value based care in radiology including decision support using appropriateness criteria, quality metrics like radiation dose monitoring, and efforts to improve the quality of the radiology report for consumption by referring providers. These initiatives are largely data driven. Organizations can choose to purchase proprietary registry systems, pay for software as a service solution, or deploy/build their own registry systems. Traditionally, registries are created for a single purpose like radiation dosage or specific disease tracking like diabetes registry. This results in a fragmented view of the patient, and increases overhead to maintain such single purpose registry system by requiring an alternative data entry workflow and additional infrastructure to host and maintain multiple registries for different clinical needs. This complexity is magnified in the health care enterprise whereby radiology systems usually are run parallel to other clinical systems due to the different clinical workflow for radiologists. In the new era of value based care where data needs are increasing with demand for a shorter turnaround time to provide data that can be used for information and decision making, there is a critical gap to develop registries that are more adapt to the radiology workflow with minimal overhead on resources for maintenance and setup. We share our experience of developing and implementing an open source registry system for quality improvement and research in our academic institution that is driven by our radiology workflow.

  15. Prioritizing Motivational and Satisfactorily Factors of Volunteer Medical and Health Personnel in Natural Disasters

    Directory of Open Access Journals (Sweden)

    Mohsen Aminizadeh

    2016-01-01

    Conclusion: The results of this research revealed that to absorb a higher number of volunteers in health and treatment organizations, commitment and purposeful aspects must be emphasized on, as by improving the motivational and satisfaction factors, we can expect that satisfaction and retention level increases in volunteers. Furthermore, by knowing the volunteers’ motivations, the managers of the health and treatment organizations can provide their retention and satisfaction and play a key role in crisis management during disasters by exploiting the volunteer services.

  16. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J

    2016-01-01

    BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...

  17. The comparison of self esteem between volunteer and non volunteer students in universities sport in Iran

    Directory of Open Access Journals (Sweden)

    Reza Andam.

    2012-03-01

    Full Text Available Studies three concepts of transformational, transactional and laissez-faire leaderships as three independent and individual dimensions. This field study is descriptive and correlative. Statistical population of this study is the volunteer students in universities' sport associations of 10 regions of the country. Among 73 universities, 17 had active sport associations. Based on Morgan table, 231 students were selected as statistical sample (n=231 from which the results of 208 questionnaires were analyzed. Bass and Avolio (1995 Multifactor Leadership Questionnaire (MLQ was used to measure managers' leadership style of the universities' sport administrations. This questionnaire includes 41 questions with 5-value Lickert scale (1=never to 5=always. Choosing satisfaction from experiencing as the most important dimension of satisfaction shows volunteers' high level of satisfaction from experiences they have acquired in universities sport associations. The reason of this fact is that sport activity in the association is long term in nature. Sport association provides the students an opportunity to experience and use their experiences in their sport and work life. This study illustrates that girls are more satisfied than boys in all satisfaction dimensions (especially acquiring experience, career, commitment, and material in sport associations. Researches show that female students' satisfaction is more than male students' satisfaction and women's job satisfaction is more than men's job satisfaction. Thus, the higher degree of job satisfaction and experiencing in female students seems more justifying. Also, it's been cleared that sport students were more satisfied than other students in all satisfaction dimensions (especially acquiring experience, career, purposeful, and commitment

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

    Science.gov (United States)

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

    2018-03-30

    conclusions from research based on trauma registry data. Copyright © 2018 Elsevier Ltd. All rights reserved.

  19. IL FENOMENO VOLUNTEERED GEOGRAPHIC INFORMATION

    Directory of Open Access Journals (Sweden)

    Flavio Lupia

    2014-12-01

    Full Text Available The contribution addresses the phenomenon of Voluntereed Geographic Informationexplaining these new and burgeoning sources of information offers multidisciplinary scientists an unprecedented opportunity to conduct research on a variety of topics at multiple spatial and temporal scales. In particular the contribution refers to two COST Actions which have been recently activated on the subject which areparticularly relevant for the growing of the European scientific community.

  20. Measuring the Impacts of a Volunteer-Based Community Development Program in Developing Volunteers' Leadership Skills

    Science.gov (United States)

    Meier, Amy; Singletary, Loretta; Hill, George

    2012-01-01

    This article summarizes the results of an evaluation of the impacts of a community development program to develop leadership skills in its adult volunteers. The evaluation featured 20 questions about leadership skills learned as a result of volunteer experiences. Data analysis strategies beyond a simple means ranking resulted in evidence…

  1. Characteristics of the Essence of Volunteering in Psychology

    Science.gov (United States)

    Shagurova, Angelina Alexandrovna; Ivanovna, Efremova Galina; Aleksandrovna, Bochkovskaya Irina; Denisenko, Sergey Ivanovich; Valerievich, Tarasov Mihail; Viktorovna, Nekrasova Marina; Potutkova, Svetlana Anatolievna

    2016-01-01

    The article discusses the basic ideas of volunteering; it analyzes the data of psychological studies on social activity and it highlights the importance of studying the motivational part of volunteering. The conclusion on structure and content of volunteering is made. Key focus is on the fact that volunteering is of particular importance in the…

  2. Motivation, Personality and Well-Being in Older Volunteers

    Science.gov (United States)

    Pushkar, Dolores; Reis, Myrna; Morros, Melinda

    2002-01-01

    This study examined the effects of personality traits and motivation to volunteer on well-being as 107 older participants went through an intervention to increase volunteering. Three groups of volunteers, current, new, and former volunteers, participated. Participants were assessed four times on standardized measures of personality, health,…

  3. Moving toward a Collective Impact Effort: The Volunteer Program Assessment

    Science.gov (United States)

    Trent, Sheridan; Prange, Kelly; Allen, Joseph A.

    2017-01-01

    Volunteers are essential to the operation of many nonprofits, but some experience challenges in retaining their volunteer workforce. The Volunteer Program Assessment (VPA) seeks to address this issue by helping organizations to identify strengths, growth areas, and recommendations for improving volunteer experiences. To maximize the effectiveness…

  4. An Analysis of volunteer motivation in HIV/AIDS community ...

    African Journals Online (AJOL)

    Many have had difficulty attracting and retaining volunteers because of failure to understand volunteer motivation. The study explores volunteerism and emphasizes that volunteers derive personal satisfactions from voluntary activities other than monetary compensation. Volunteers “expect a return on their investment”.

  5. Neighbourly Acts--Volunteering, Social Capital and Democracy.

    Science.gov (United States)

    Wilkinson, Jennifer; Bittman, Michael

    2002-01-01

    Robert Putnam's view of social capital considers the decline in volunteering as a crisis for democracy. However, data on volunteering in Australia from 1974-1997 indicate that there is likely to be a significant increase in total volunteer hours. Beyond the contribution to democratic society, the values implicit in volunteering increase the…

  6. Validity of rheumatoid arthritis diagnoses in the Danish National Patient Registry

    DEFF Research Database (Denmark)

    Pedersen, M.; Klarlund, M.; Jacobsen, S.

    2004-01-01

    to RA satisfying the ACR 1987 classification criteria was estimated to 26%. Our conclusion is that with careful attention to the limitations in the data, discharge diagnoses for patients with records of RA in the Danish NPR can be used for epidemiological research purposes; however, our findings prompt...... general carefulness when using non-audited registries for research in RA....

  7. Volunteer Computing Experience with ATLAS@Home

    CERN Document Server

    Cameron, David; The ATLAS collaboration; Bourdarios, Claire; Lan\\c con, Eric

    2016-01-01

    ATLAS@Home is a volunteer computing project which allows the public to contribute to computing for the ATLAS experiment through their home or office computers. The project has grown continuously since its creation in mid-2014 and now counts almost 100,000 volunteers. The combined volunteers' resources make up a sizable fraction of overall resources for ATLAS simulation. This paper takes stock of the experience gained so far and describes the next steps in the evolution of the project. These improvements include running natively on Linux to ease the deployment on for example university clusters, using multiple cores inside one job to reduce the memory requirements and running different types of workload such as event generation. In addition to technical details the success of ATLAS@Home as an outreach tool is evaluated.

  8. The volunteer programme ‘Night Ravens’:

    DEFF Research Database (Denmark)

    Larsen, Britt Østergaard; Kleif, Helle Bendix; Kolodziejczyk, Christophe

    2015-01-01

    The volunteer programme ‘Night Ravens’ (NR) was founded in Sweden in 1987 and has, over the years, developed into a Scandinavian concept covering large areas of Sweden, Denmark, Norway, Greenland and the Faroe Islands. The NR programme is a crime prevention initiative with adults walking...... the streets at night in identifiable ‘uniforms’ in areas with high activity. The purpose of this study is to evaluate the effects of the NR programme in Denmark based on a volunteer set-up with a less intrusive approach to situational crime prevention than, for instance, hot spot policing. The analyses...... with NR organizations to districts without NR organizations. The results show no difference in the crime rates between Danish postcode districts with and without the NR programme. Hence, we cannot identify positive effects of situational crime prevention when evaluating this Scandinavian volunteer...

  9. Prioritizing Motivational and Satisfactorily Factors of Volunteer Medical and Health Personnel in Natural Disasters

    Directory of Open Access Journals (Sweden)

    Mohsen Aminizadeh

    2016-01-01

    Full Text Available Background: Currently, volunteer forces are among the main members of the healthcare services, particularly in the treatment sector, and play a key role in healthcare and treatment services. Since efficient human resources are the greatest and most important assets of all organizations, they constantly work to train, retain, and get the best of these valuable assets. The main objective of this work was to prioritize the motivational factors and satisfaction of the volunteer forces participating in treatment and health programs in the case of emergencies. Materials and Methods: The study population of this research was all volunteers (N=600 in treatment and health programs of Kerman Province. Using the Morgan Table, 360 subjects were selected. The data-gathering instrument was Andam’s questionnaire of motivational factors with reliability of 0.94, and Galindo-Kuhn and Guzley (2001 questionnaire of satisfaction with reliability of 0.92. To determine research data distribution, Kolmogorov-Smirnov test was applied. Moreover, for data analysis inferential statistics tests of Friedman, Mann–Whitney U, and Kruskal–Wallis were used at significance level of P<0.05. Results: The present research revealed that the most and least important motivational factors in volunteers of treatment and health units were purposeful motivation and financial motivation with average rankings of 5.45 and 1.99, respectively. In addition, among the satisfaction factors, the volunteers reported communication with volunteers and organizational communication as the most and least important satisfaction factors, respectively. The results of this research indicated that the female volunteers participated in volunteer activities with greater occupational, support, progress, and social motivations. In addition, single participants had greater occupational, social, and financial motivations towards participation in these activities as compared to married participants

  10. Mexican registry of pulmonary hypertension: REMEHIP.

    Science.gov (United States)

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

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

  11. Costing Tool for International Cancer Registries

    Centers for Disease Control (CDC) Podcasts

    2016-11-21

    A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries.  Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 11/21/2016.

  12. An international registry for primary ciliary dyskinesia

    DEFF Research Database (Denmark)

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian

    2016-01-01

    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 u...

  13. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

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

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their

  14. Correlating Orphaned Windows Registry Data Structures

    Directory of Open Access Journals (Sweden)

    Damir Kahved

    2009-06-01

    Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

  15. Danish Registry of Childhood and Adolescent Diabetes

    DEFF Research Database (Denmark)

    Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per

    2016-01-01

    AIM: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids) are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. STUDY POPULATION: The study population consists of all...

  16. Motivation of Volunteers to Work in Palliative Care Setting: A Qualitative Study.

    Science.gov (United States)

    Muckaden, M A; Pandya, Sachi Sanjay

    2016-01-01

    Volunteers are an integral part of the palliative care services in the Tata Memorial Hospital, Mumbai, Maharashtra, India. These volunteers are an important resource for the department. Thus, it is necessary for the department to determine what motivates these volunteers to continue to work in the setting, acknowledge them and direct efforts toward retaining them and giving them opportunities to serve to the best of their desire and abilities. The current study aimed at understanding the motivation of volunteers to work in palliative care, to identify the challenges they face and also the effect of their work on their self and relationships. In-depth interviews were conducted using semistructured interview guide to study above mentioned aspects. Themes were identified and coding was used to analyze the data. The results suggested that the basic motivation for all the volunteers to work in a palliative care setting is an inherent urge, a feeling of need to give back to the society by serving the sick and the suffering. Other motivating factors identified were team spirit, comfort shared, warm and respectful treatment by the team, satisfying nature of work, experience of cancer in the family, and aligned values and beliefs. Some intrinsic rewards mentioned by volunteers were joy of giving, personal growth, enriching experiences, and meaningful nature of work. The study attempted to improve opportunities of working for these volunteers. Although limited in scope, it offers insight for future research in the area of volunteerism in palliative care setup.

  17. Relationship between personality traits, job satisfaction, and job involvement among Taiwanese community health volunteers.

    Science.gov (United States)

    Li, I-Chuan; Lin, Mei-Chih; Chen, Ching-Min

    2007-01-01

    To understand the relationship between job involvement, job satisfaction, and personality traits among health volunteers in one Taiwan community. It is not easy to retain voluntary workers as part of health programs even though they have been trained. Previous research has shown that in order to increase job involvement, volunteers must effectively fulfill their needs to achieve and obtain job satisfaction. Cross-sectional design. Surveys were mailed to 317 health volunteers at community health centers in I-lan County, northern Taiwan; 213 complete responses (67%) were received. The survey instrument included sociodemographic items and scales measuring locus of control, achievement orientation, job involvement, and job satisfaction. Most respondents (94.8%) were female and their average age was 49.6 years. In terms of personality traits, most volunteers showed internal control orientation. Explainable variance for the prediction of job involvement from a combination of participation frequency, on-job training, achievement orientation, and job satisfaction was 33.6%. The results suggest that there is a need to strengthen cooperative relationships among volunteers by initiating well-planned volunteer training programs and growth groups. These should involve the empowerment concept with the aim of enhancing the volunteers' interpersonal relationships and job satisfaction.

  18. Results from the national hospice volunteer training survey.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Schneider, Greg; Oliver, Debra Parker

    2010-03-01

    Although the role of volunteers is at the heart of hospice care, little is known about hospice volunteer training and volunteer activity. A survey was used to assess current training programs for hospice volunteers. Hospices were invited to participate in the study from a link on the website for the Hospice Volunteer Association and Hospice Educators Affirming Life Project. Survey results revealed that the majority of volunteer work is in patient care, with most hospice agencies requiring a minimum 12-month volunteer commitment and an average 4-hour volunteer shift per week. Volunteer training is separate from staff training, is provided by paid agency staff, and costs approximately $14,303 per year. Communication and family support are considered important curriculum topics. Revisions to current volunteer training curriculum and format are suggested.

  19. Environmental Volunteering and Health Outcomes over a 20-Year Period

    Science.gov (United States)

    Pillemer, Karl; Fuller-Rowell, Thomas E.; Reid, M. C.; Wells, Nancy M.

    2010-01-01

    Purpose: This study tested the hypothesis that volunteering in environmental organizations in midlife is associated with greater physical activity and improved mental and physical health over a 20-year period.  Design and Methods: The study used data from two waves (1974 and 1994) of the Alameda County Study, a longitudinal study of health and mortality that has followed a cohort of 6,928 adults since 1965. Using logistic and multiple regression models, we examined the prospective association between environmental and other volunteerism and three outcomes (physical activity, self-reported health, and depression), with 1974 volunteerism predicting 1994 outcomes, controlling for a number of relevant covariates.  Results: Midlife environmental volunteering was significantly associated with physical activity, self-reported health, and depressive symptoms.  Implications: This population-based study offers the first epidemiological evidence for a significant positive relationship between environmental volunteering and health and well-being outcomes. Further research, including intervention studies, is needed to confirm and shed additional light on these initial findings. PMID:20172902

  20. How volunteering helps students to develop soft skills

    Science.gov (United States)

    Khasanzyanova, Albina

    2017-06-01

    It is widely recognised that tertiary education does not provide all of the knowledge and skills required to succeed in modern societies. Personal and interpersonal skills - so-called "soft skills" - are also needed to complement professional skills and expertise, and become an essential part of an individual's personality. One way of acquiring soft skills is volunteering with associations and non-governmental organisations (NGOs). This paper discusses the involvement of French third-level students in voluntary activities and the skills they acquire as a result. The author presents the findings of a study involving a questionnaire and semi-structured interviews. Results show that many students develop skills linked to their future professional career, that they reflect on this consciously and feel enriched by the experience. The author argues that "non-professional" activities like volunteering can be actively incorporated into students' learning process, making their overall experience of higher education more active, enjoyable and relevant. Learning through action was found to be the most important factor in the acquisition of soft skills. This article aims to contribute to research on the educational dimension of volunteering, demonstrating that it benefits both personal and professional development.

  1. AVOCLOUDY: a simulator of volunteer clouds

    DEFF Research Database (Denmark)

    Sebastio, Stefano; Amoretti, Michele; Lluch Lafuente, Alberto

    2015-01-01

    application, intelligent agents constitute a feasible technology to add autonomic features to cloud operations. Furthermore, the volunteer computing paradigm—one of the Information and Communications Technology (ICT) trends of the last decade—can be pulled alongside traditional cloud approaches......, with the purpose to ‘green’ them. Indeed, the combination of data center and volunteer resources, managed by agents, allows one to obtain a more robust and scalable cloud computing platform. The increased challenges in designing such a complex system can benefit from a simulation-based approach, to test autonomic...

  2. The Computational and Storage Potential of Volunteer Computing

    OpenAIRE

    Anderson, David P.; Fedak, Gilles

    2006-01-01

    "Volunteer computing" uses Internet-connected computers, volunteered by their owners, as a source of computing power and storage. This paper studies the potential capacity of volunteer computing. We analyzed measurements of over 330,000 hosts participating in a volunteer computing project. These measurements include processing power, memory, disk space, network throughput, host availability, user-specified limits on resource usage, and host churn. We show that volunteer computing can support ...

  3. Self-Perceived Traits of Servant Leadership in AmeriCorps Volunteers: A Mixed Method Concurrent Explanatory Study

    Science.gov (United States)

    Cook, Karen F.

    2015-01-01

    Although the tenets of modern servant leadership originated by Greenleaf (1970) have long been applied to service enterprise, no known research has applied the principles to the self-perception of AmeriCorps volunteers who commit to one year of service. The purpose of this mixed-method study was to determine whether volunteers who commit to one…

  4. Volunteer bias, sexuality, and personality.

    Science.gov (United States)

    Trivedi, N; Sabini, J

    1998-04-01

    Participants were recruited either for a study of sexual attitudes and behavior or for a study of attitudes and behavior without mention of sexuality. Both groups answered questions about their sexual behavior and completed the Self-Monitoring Scale, the Balanced F Scale, and the Social Responsibility Scale. No differences were found as a function of recruitment technique in the mean reports of subjects' sexual behavior, but substantial differences were found in some of the relationships between these personality variables and sexual behavior reports as a function of recruitment technique; the correlation between the balanced F Scale score and masturbation frequency for females was +0.61 for those recruited for a study of sexual behavior and -0.61 for those recruited for a study of general attitudes and behavior. In both groups, larger correlations were found between female sexual behavior and personality than between male sexual behavior and personality. In all groups, the Self-Monitoring Scale was significantly correlated with masturbation frequency. The results are discussed in terms of self-selection bias and self-presentation bias, both of which may affect research on sexuality.

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

    Science.gov (United States)

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

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. © 2014 Wiley Periodicals, Inc.

  6. Volunteering predicts health among those who value others: two national studies.

    Science.gov (United States)

    Poulin, Michael J

    2014-02-01

    The purpose of these studies was to examine the role of positive views of other people in predicting stress-buffering effects of volunteering on mortality and psychological distress. In Study 1, stressful life events, volunteering, and hostile cynicism assessed in a baseline Detroit-area survey (N = 846) predicted survival over a 5-year period, adjusting for relevant covariates. In Study 2, stressful life events, volunteering, and world benevolence beliefs assessed in a baseline national survey (N = 1,157) predicted psychological distress over a 1-year period, adjusting for distress at baseline. In Study 1, a Cox proportional hazard model indicated that for individuals low in cynicism, stress predicted mortality at low levels of volunteering but not at high levels of volunteering. This effect was not present among those high in cynicism. In Study 2, multiple regression analysis revealed that among individuals high in world benevolence beliefs, stress predicted elevated distress at low levels of volunteering but not at high levels of volunteering. This effect was absent for those lower in world benevolence beliefs. Consistent with prior research on helping behavior, these studies indicate that helping behavior can buffer the effects of stress on health. However, the results of these studies indicate that stress-buffering effects of volunteering are limited to individuals with positive views of other people. Not all individuals may benefit from volunteering, and health-promotion efforts seeking to draw on health benefits of helping behavior may need to target their approach accordingly. PsycINFO Database Record (c) 2014 APA, all rights reserved.

  7. A Survey of Hospice Volunteer Coordinators: Training Methods and Objectives of Current Hospice Volunteer Training Programs.

    Science.gov (United States)

    Brock, Cara M; Herndon, Christopher M

    2017-06-01

    Currently more than 5800 hospice organizations operate in the United States. 1 Hospice organizations are required by the Centers for Medicare and Medicaid Services (CMS) to use volunteers for services provided to patients. 2 Although CMS regulates the amount of hours hospice volunteers should provide, there are currently no national requirements for objectives of training. 3 The purpose of this study was to gather information from a sample of hospices regarding volunteer coordinator background, current training for volunteers, importance of training objectives, and any comments regarding additional objectives. Representative state hospice organizations were contacted by e-mail requesting their participation and distribution of the survey throughout their member hospices. The survey asked demographical questions, along with ratings of training components based on perceived level of importance and time spent on each objective. A total of 90 surveys were received, and the response rate was undeterminable. Results showed the majority of hospices were nonprofit, had less than 100 currently trained volunteers, and maintained an average daily patient census of less than 50. Questions regarding training programs indicated that most use live lecture methods of approximately 19 hours or less in duration. Overall, responding hospice organizations agreed that all objectives surveyed were important in training volunteers. The small number of respondents to this survey makes generalization nationwide difficult, however it is a strong starting point for the development of further surveys on hospice volunteer training and achieving a standardized set of training objectives and delivery methods.

  8. A review of national shoulder and elbow joint replacement registries

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S

    2012-01-01

    The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....

  9. The Danish Multiple Sclerosis Registry. History, data collection and validity

    DEFF Research Database (Denmark)

    Koch-Henriksen, N; Rasmussen, S; Stenager, E

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...

  10. Beliefs about Volunteerism, Volunteering Intention, Volunteering Behavior, and Purpose in Life among Chinese Adolescents in Hong Kong

    OpenAIRE

    Ben M. F. Law; Daniel T. L. Shek

    2009-01-01

    The relationships among beliefs about volunteerism, volunteering intention, volunteering behavior, and purpose in life were examined in this study. A total of 5,946 participants completed a series of scales, including the Revised Personal Functions of Volunteerism Scale, Volunteering Intention Scale, and Purpose in Life Scale. The results showed that participants whose purpose in life had different levels also had varied prosocial beliefs about volunteerism, volunteering intention, and volunt...

  11. BOINC service for volunteer cloud computing

    International Nuclear Information System (INIS)

    Høimyr, N; Blomer, J; Buncic, P; Giovannozzi, M; Gonzalez, A; Harutyunyan, A; Jones, P L; Karneyeu, A; Marquina, M A; Mcintosh, E; Segal, B; Skands, P; Grey, F; Lombraña González, D; Zacharov, I

    2012-01-01

    Since a couple of years, a team at CERN and partners from the Citizen Cyberscience Centre (CCC) have been working on a project that enables general physics simulation programs to run in a virtual machine on volunteer PCs around the world. The project uses the Berkeley Open Infrastructure for Network Computing (BOINC) framework. Based on CERNVM and the job management framework Co-Pilot, this project was made available for public beta-testing in August 2011 with Monte Carlo simulations of LHC physics under the name “LHC at home 2.0” and the BOINC project: “Test4Theory”. At the same time, CERN's efforts on Volunteer Computing for LHC machine studies have been intensified; this project has previously been known as LHC at home, and has been running the “Sixtrack” beam dynamics application for the LHC accelerator, using a classic BOINC framework without virtual machines. CERN-IT has set up a BOINC server cluster, and has provided and supported the BOINC infrastructure for both projects. CERN intends to evolve the setup into a generic BOINC application service that will allow scientists and engineers at CERN to profit from volunteer computing. This paper describes the experience with the two different approaches to volunteer computing as well as the status and outlook of a general BOINC service.

  12. The Benefits of Volunteering for Psychology Students

    Science.gov (United States)

    Bromnick, Rachel; Horowitz, Ava; Shepherd, Daniel

    2012-01-01

    Within the current economic climate students are seen as needing more than a degree to succeed in securing graduate employment. One way that students chose to enhance their employability is through engaging in voluntary work. In this empirical study, undergraduate psychology students' reasons for volunteering are explored within the context of…

  13. Dynamics of Volunteering in Older Europeans

    Science.gov (United States)

    Hank, Karsten; Erlinghagen, Marcel

    2010-01-01

    Purpose: To investigate the dynamics of volunteering in the population aged 50 years or older across 11 Continental European countries. Design and Methods: Using longitudinal data from the first 2 waves of the Survey of Health, Ageing and Retirement in Europe, we run multivariate regressions on a set of binary-dependent variables indicating…

  14. International Volunteering: Employability, Leadership and More

    Science.gov (United States)

    Rothwell, Andrew; Charleston, Brandon

    2013-01-01

    Purpose: The purpose of this paper is to investigate the experiences of individuals in transition between education and work during international volunteering expeditions. While it was expected that outcomes might include employability enhancement and skill development, the authors aimed to clarify what the main factors were, examine employability…

  15. The Invention and Institutionalization of Volunteer Centers

    DEFF Research Database (Denmark)

    Lorentzen, Håkon; Henriksen, Lars Skov

    2014-01-01

    the Norwegian centers lacked a national coordinating unit. Third, an independent legal form in which local associations are members may have helped Danish centers bring about a sense of local ownership. In Norway, volunteer centers had weak ties to other local voluntary associations and were at times perceived...

  16. Using Volunteer Families in Teaching Family Sociology

    Science.gov (United States)

    Gunter, B. G.

    1974-01-01

    Describes a method for teaching family sociology to students by utilizing volunteer families. Benefits of the approach were that students became involved in subject matter of a course on a semi-empirical level, and they became aware of all dimensions of family life. (EK)

  17. BOINC service for volunteer cloud computing

    Science.gov (United States)

    Høimyr, N.; Blomer, J.; Buncic, P.; Giovannozzi, M.; Gonzalez, A.; Harutyunyan, A.; Jones, P. L.; Karneyeu, A.; Marquina, M. A.; Mcintosh, E.; Segal, B.; Skands, P.; Grey, F.; Lombraña González, D.; Zacharov, I.

    2012-12-01

    Since a couple of years, a team at CERN and partners from the Citizen Cyberscience Centre (CCC) have been working on a project that enables general physics simulation programs to run in a virtual machine on volunteer PCs around the world. The project uses the Berkeley Open Infrastructure for Network Computing (BOINC) framework. Based on CERNVM and the job management framework Co-Pilot, this project was made available for public beta-testing in August 2011 with Monte Carlo simulations of LHC physics under the name “LHC@home 2.0” and the BOINC project: “Test4Theory”. At the same time, CERN's efforts on Volunteer Computing for LHC machine studies have been intensified; this project has previously been known as LHC@home, and has been running the “Sixtrack” beam dynamics application for the LHC accelerator, using a classic BOINC framework without virtual machines. CERN-IT has set up a BOINC server cluster, and has provided and supported the BOINC infrastructure for both projects. CERN intends to evolve the setup into a generic BOINC application service that will allow scientists and engineers at CERN to profit from volunteer computing. This paper describes the experience with the two different approaches to volunteer computing as well as the status and outlook of a general BOINC service.

  18. Embedding Volunteer Activity into Paramedic Education.

    Science.gov (United States)

    Ross, Linda; Kabidi, Sophia

    2017-01-01

    Paramedics require a wide range of skills that are beyond clinical or technical skills in order to meet the demands of the role and provide quality and compassionate care to patients. Non-technical or "soft" skills and attributes are generally challenging to teach and develop in the classroom setting. Volunteerism provides an opportunity for students to gain exposure to different communities and develop interpersonal skills. This cross-sectional study used one-on-one interviews with 12 third-year Bachelor of Emergency Health (Paramedic) students from Monash University, Australia, who completed a community volunteering program. Results suggest that paramedic students see volunteering as a highly valuable means of developing a number of skills crucial to their future roles and paramedic practice. Volunteering also provided students with an opportunity to learn about themselves and the broader community, develop confidence, and improve overall job-readiness and employability. This study demonstrates that embedding volunteering into paramedic education is an effective way to develop the broad range of paramedic attributes required for the role. These experiences allow students to make the important transition to a job-ready graduate paramedic who can provide holistic patient-centred care.

  19. Volunteers in Wikipedia: Why the Community Matters

    Science.gov (United States)

    Baytiyeh, Hoda; Pfaffman, Jay

    2010-01-01

    Wikipedia is a reliable encyclopedia with over seven million articles in several languages all contributed and maintained by volunteers. To learn more about what drives people to devote their time and expertise to building and maintaining this remarkable resource, surveys with Likert-scaled items measuring different types of motivations were…

  20. Effectiveness of trained community volunteers in improving ...

    African Journals Online (AJOL)

    2015-03-18

    Mar 18, 2015 ... Introduction: Malaria accounts for 70% of illnesses and 30% of deaths among children under 5 years in Nigeria. This study was aimed at determining the effectiveness of trained community volunteers in delivering multiple anti‑malaria interventions to achieve rapid reduction in morbidity and mortality among ...