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

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)

Current concepts in clinical research: web-based, automated, arthroscopic surgery prospective database registry.

Science.gov (United States)

Lubowitz, James H; Smith, Patrick A

2012-03-01

In 2011, postsurgical patient outcome data may be compiled in a research registry, allowing comparative-effectiveness research and cost-effectiveness analysis by use of Health Insurance Portability and Accountability Act-compliant, institutional review board-approved, Food and Drug Administration-approved, remote, Web-based data collection systems. Computerized automation minimizes cost and minimizes surgeon time demand. A research registry can be a powerful tool to observe and understand variations in treatment and outcomes, to examine factors that influence prognosis and quality of life, to describe care patterns, to assess effectiveness, to monitor safety, and to change provider practice through feedback of data. Registry of validated, prospective outcome data is required for arthroscopic and related researchers and the public to advocate with governments and health payers. The goal is to develop evidence-based data to determine the best methods for treating patients. Copyright © 2012 Arthroscopy Association of North America. Published by Elsevier Inc. All rights reserved.

Communications between volunteers and health researchers during recruitment and informed consent: qualitative content analysis of email interactions.

Science.gov (United States)

Townsend, Anne; Amarsi, Zubin; Backman, Catherine L; Cox, Susan M; Li, Linda C

2011-10-13

While use of the Internet is increasingly widespread in research, little is known about the role of routine electronic mail (email) correspondence during recruitment and early volunteer-researcher interactions. To gain insight into the standpoint of volunteers we analyzed email communications in an early rheumatoid arthritis qualitative interview study. The objectives of our study were (1) to understand the perspectives and motivations of individuals who volunteered for an interview study about the experiences of early rheumatoid arthritis, and (2) to investigate the role of emails in volunteer-researcher interactions during recruitment. Between December 2007 and December 2008 we recruited 38 individuals with early rheumatoid arthritis through rheumatologist and family physician offices, arthritis Internet sites, and the Arthritis Research Centre of Canada for a (face-to-face) qualitative interview study. Interested individuals were invited to contact us via email or telephone. In this paper, we report on email communications from 12 of 29 volunteers who used email as their primary communication mode. Emails offered insights into the perspective of study volunteers. They provided evidence prospectively about recruitment and informed consent in the context of early rheumatoid arthritis. First, some individuals anticipated that participating would have mutual benefits, for themselves and the research, suggesting a reciprocal quality to volunteering. Second, volunteering for the study was strongly motivated by a need to access health services and was both a help-seeking and self-managing strategy. Third, volunteers expressed ambivalence around participation, such as how far participating would benefit them, versus more general benefits for research. Fourth, practical difficulties of negotiating symptom impact, medical appointments, and research tasks were revealed. We also reflect on how emails documented volunteer-researcher interactions, illustrating typically

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 ...

Eye Care Professionals' Perspectives on Eye Donation and an Eye Donation Registry for Research: A Single-Institution, Cross-Sectional Study.

Science.gov (United States)

Williams, Andrew M; Allingham, R Rand; Stamer, W Daniel; Muir, Kelly W

2016-06-01

A centralized eye donation registry for research could help to bridge the gap between patients interested in donating their eyes to science and scientists who conduct research on human eye tissue. Previous research has demonstrated patient and family support for such a registry. In this study, we assessed the views that eye care professionals have toward an eye donation registry for research. Surveys were distributed to all 46 clinical faculty members of the Duke University Eye Center. In addition to collecting demographic information, the surveys assessed clinicians' experience with discussing eye donation with patients, described the proposed eye donation registry for research and asked how the registry would affect the clinicians' practice. A total of 21 eye care professionals returned the survey. Thirty-three percent reported discussing eye donation with patients, and 43% reported that a patient has asked about donating their eyes for research on their disease. Eighty-six percent of eye care professionals reported that a centralized registry would improve the way they work with patients who express a desire to donate their eyes for research. The majority of eye care professionals at our academic institution indicated that an eye donation registry for research would improve how they work with patients who are interested in donating their eyes for research on their disease. Future research should examine how best to communicate this registry to ophthalmic patients.

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.…

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…

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.

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.

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.

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

Using the IR as a Research Data Registry

KAUST Repository

Grenz, Daryl M.

2018-05-01

As data and software become increasingly common research outputs, universities have an opportunity to expand their existing efforts to record affiliated publications so that they also capture information about research data releases. At KAUST we have taken several steps to put our repository on a path towards becoming a reliable registry for information about the existence and location of research data released by affiliated researchers. These included developing a process to retrospectively retrieve and register information about datasets with machine-readable relationships to publications already in the repository, and updates to our active publications tracking procedures so that data availability statements are retrieved at the time of harvesting and checked for references to research data. The presentation will conclude by discussing how these efforts help put the repository in a position to provide expanded services in support of improved research data management, including access to and preservation of research data not explicitly linked to a formal publication.

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.

[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.

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).

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...

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.

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

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.

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.

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.

#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...

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.

Medical Research Volunteer Program (MRVP): innovative program promoting undergraduate research in the medical field.

Science.gov (United States)

Dagher, Michael M; Atieh, Jessica A; Soubra, Marwa K; Khoury, Samia J; Tamim, Hani; Kaafarani, Bilal R

2016-06-06

Most educational institutions lack a structured system that provides undergraduate students with research exposure in the medical field. The objective of this paper is to describe the structure of the Medical Research Volunteer Program (MRVP) which was established at the American University of Beirut, Lebanon, as well as to assess the success of the program. The MRVP is a program that targets undergraduate students interested in becoming involved in the medical research field early on in their academic career. It provides students with an active experience and the opportunity to learn from and support physicians, clinical researchers, basic science researchers and other health professionals. Through this program, students are assigned to researchers and become part of a research team where they observe and aid on a volunteer basis. This paper presents the MRVP's four major pillars: the students, the faculty members, the MRVP committee, and the online portal. Moreover, details of the MRVP process are provided. The success of the program was assessed by carrying out analyses using information gathered from the MRVP participants (both students and faculty). Satisfaction with the program was assessed using a set of questions rated on a Likert scale, ranging from 1 (lowest satisfaction) to 5 (highest satisfaction). A total of 211 students applied to the program with a total of 164 matches being completed. Since the beginning of the program, three students have each co-authored a publication in peer-reviewed journals with their respective faculty members. The majority of the students rated the program positively. Of the total number of students who completed the program period, 35.1 % rated the effectiveness of the program with a 5, 54.8 % rated 4, and 8.6 % rated 3. A small number of students gave lower ratings of 2 and 1 (1.1 % and 0.4 %, respectively). The MRVP is a program that provides undergraduate students with the opportunity to learn about research firsthand

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...

Developing the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a collaborative pan-stakeholder critical path registry model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

Science.gov (United States)

Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Kowey, Peter; Hammill, Stephen C; Ellenbogen, Kenneth A; Marinac-Dabic, Danica; Waldo, Albert L; Brindis, Ralph G; Wilbur, David J; Jackman, Warren M; Yaross, Marcia S; Russo, Andrea M; Prystowsky, Eric; Varosy, Paul D; Gross, Thomas; Pinnow, Ellen; Turakhia, Mintu P; Krucoff, Mitchell W

2010-10-01

Although several randomized clinical trials have demonstrated the safety and efficacy of catheter ablation of atrial fibrillation (AF) in experienced centers, the outcomes of this procedure in routine clinical practice and in patients with persistent and long-standing persistent AF remain uncertain. Brisk adoption of this therapy by physicians with diverse training and experience highlights potential concerns regarding the safety and effectiveness of this procedure. Some of these concerns could be addressed by a national registry of AF ablation procedures such as the Safety of Atrial Fibrillation Ablation Registry Initiative that was initially proposed at a Cardiac Safety Research Consortium Think Tank meeting in April 2009. In January 2010, the Cardiac Safety Research Consortium, in collaboration with the Duke Clinical Research Institute, the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, held a follow-up meeting of experts in the field to review the construct and progress to date. Other participants included the National Heart, Lung, and Blood Institute; the Centers for Medicare and Medicaid Services; the Agency for Healthcare Research and Quality; the AdvaMed AF working group; and additional industry representatives. This article summarizes the discussions that occurred at the meeting of the state of the Safety of Atrial Fibrillation Ablation Registry Initiative, the identification of a clear pathway for its implementation, and the exploration of solutions to potential issues in the execution of this registry. Copyright © 2010 Mosby, Inc. All rights reserved.

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

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

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.

Communications Between Volunteers and Health Researchers during Recruitment and Informed Consent: Qualitative Content Analysis of Email Interactions

OpenAIRE

Townsend, Anne; Amarsi, Zubin; Backman, Catherine L; Cox, Susan M; Li, Linda C

2011-01-01

Background While use of the Internet is increasingly widespread in research, little is known about the role of routine electronic mail (email) correspondence during recruitment and early volunteer?researcher interactions. To gain insight into the standpoint of volunteers we analyzed email communications in an early rheumatoid arthritis qualitative interview study. Objectives The objectives of our study were (1) to understand the perspectives and motivations of individuals who volunteered for ...

Down syndrome: national conference on patient registries, research databases, and biobanks.

Science.gov (United States)

Oster-Granite, Mary Lou; Parisi, Melissa A; Abbeduto, Leonard; Berlin, Dorit S; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A; Reeves, Roger H; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R B; Maddox, Yvonne T

2011-01-01

A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. Copyright © 2011. Published by Elsevier Inc. All rights reserved.

Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

Science.gov (United States)

Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

2017-07-01

All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.

Iranian Joint Registry(Iranian National Hip and Knee Arthroplasty Registry

Directory of Open Access Journals (Sweden)

Hamidreza Aslani

2016-04-01

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

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

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......-99%); Case 5: 91% (87-93%)]. These numbers did not differ significantly from those found 6 weeks later (NcNemar's test p>0.05). Conclusion: The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR......-CARE has the potential to enhance future European collaborations regarding clinical research in IBD....

Unintended volunteers: the volunteering pathways of working class young people in community sport

OpenAIRE

Bradford, S; Hills, L; Johnston, C

2016-01-01

Sport has become a major setting for youth volunteering in the UK. Volunteering has become understood as a means of enhancing responsible citizenship and of adding various capitals to young people’s identities. Much research on young people’s volunteering in sport has typically (and sometimes by default) focused on middle class experiences, highlighting the combination of instrumental and altruistic motives for volunteering, the importance of family and school in decisions about volunteering ...

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.

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

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.

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

Science.gov (United States)

Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

2014-06-07

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

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.

Probability of Finding Marrow Unrelated Donor (MUD) for an Indian patient in a Multi-national Human Leukocyte Antigen (HLA) Registry.

Science.gov (United States)

Tiwari, Aseem K; Bhati-Kushwaha, Himakshi; Kukreja, Pooja; Mishra, Vikash C; Tyagi, Neetu; Sharma, Ashish; Raina, Vimarsh

2015-06-01

With an increase in the number of transplants happening globally, hematopoietic stem cells (HSC) transplantation from matched unrelated donor (MUD) has begun. The increasing trend of MUD transplants across countries has been largely facilitated with the conspicuous growth of volunteer HSC donor noted in the last decade i.e. 8 million HSC donors in 2002 to more than 22 million in 2013 registered in 71 member registries of the Bone Marrow Donor Worldwide (BMDW). Some populations of the world are still very poorly represented in these registries. Since, the chances of successful engraftment and disease free survival are directly proportional to the HLA compatibility between the recipient and the prospective donor, the diversity of the HLA system at the antigenic and allelic level and the heterogeneity of HLA data of the registered donors has a bearing on the probability of finding a volunteer unrelated HSC donor for patients from such populations. In the present study 126 patients were identified suffering from hematological diseases requiring MUD transplant. Their HLA typing was performed and search was done using BMDW database. The search results for these Indian patients in the multinational registry as well as in the Indian Registries were analyzed using mean, range, standard deviation and finally evaluated in terms of probability for finding matched donor (MUD). Total Asian population is only 11 % in the BMDW making it difficult to find a MUD for an Asian patient. The current study supports this, experimentally; revealing that the probability of finding an allele match for an Indian patient in the multinational Human Leukocyte Antigen (HLA) registries is 16 % and a dismal 0.008 % in the Indian registries (donors in Indian registries is just 33,678 as compared to 22.5 million in BMDW). This greatly, emphasizes on enhancing the number of Indian donors in Indian and multi-national registries.

Functional requirements regarding medical registries--preliminary results.

Science.gov (United States)

Oberbichler, Stefan; Hörbst, Alexander

2013-01-01

The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

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...

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

Science.gov (United States)

Mathis-Edenhofer, Stefan; Piso, Brigitte

2011-12-01

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

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.

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.

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

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

Science.gov (United States)

2002-10-01

justice have long been associated with social practices such as punishment, taxation and political The Human Volunteer in Military Biomedical Research...suspension of eligibility to receive research funding, to use investigational interventions, or to practise medicine. Unless there are persuasive reasons to do

[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.

Motivations for Youth Volunteer Participation: Types and Structure--An Analysis of Interviews with Twenty-Four Young Volunteers

Science.gov (United States)

Luping, Wu

2011-01-01

Scholars who study volunteer activities are attaching ever greater importance to the motivations of volunteers who participate in volunteer activities. However, deficiencies are, on the whole, to be found in the empirical studies by scholars in China on the participating volunteers' motivations. To make up for the deficiencies in the research on…

Current situation and challenge of registry in China.

Science.gov (United States)

Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

2014-09-01

Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

Meta-analysis of individual registry results enhances international registry collaboration.

Science.gov (United States)

Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

2018-03-28

Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

Conference Proceedings: “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks”

Science.gov (United States)

Oster-Granite, Mary Lou; Parisi, Melissa A.; Abbeduto, Leonard; Berlin, Dorit S.; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L.; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A.; Reeves, Roger H.; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F.; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R.B.; Maddox, Yvonne T.

2011-01-01

A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. PMID:21835664

The Genotype and Phenotype (GaP) registry: a living biobank for the analysis of quantitative traits.

Science.gov (United States)

Gregersen, Peter K; Klein, Gila; Keogh, Mary; Kern, Marlena; DeFranco, Margaret; Simpfendorfer, Kim R; Kim, Sun Jung; Diamond, Betty

2015-12-01

We describe the development of the Genotype and Phenotype (GaP) Registry, a living biobank of normal volunteers who are genotyped for genetic markers related to human disease. Participants in the GaP can be recalled for hypothesis driven study of disease associated genetic variants. The GaP has facilitated functional studies of several autoimmune disease associated loci including Csk, Blk, PDRM1 (Blimp-1) and PTPN22. It is likely that expansion of such living biobank registries will play an important role in studying and understanding the function of disease associated alleles in complex disease.

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)

Clinical disease registries in acute myocardial infarction.

Science.gov (United States)

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

2014-06-26

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

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.

The Brazilian Twin Registry.

Science.gov (United States)

Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F

2016-12-01

The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.

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.

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...

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.

The White Lion Volunteer Program in South Africa: A Study of Volunteer Needs

Directory of Open Access Journals (Sweden)

Boretti Tanya

2014-01-01

Full Text Available Volunteer tourists are motivated to participate in volunteer programs due to their need to ‘do something different’, ‘see another culture’ and ‘to escape’, amongst others. The research aims to determine the internal and external factors that motivate individuals to participate in the Tsau! Global White Lion Protection Trust’s (GWLPT volunteer program. Maslow’s theory of human motivation and Frankl’s study of human behaviour are used to explore intrinsic factors whereas extrinsic or macro environmental factors of influence are also investigated. A mixed method approach with focus group discussions and an online survey is followed. A background to the volunteer program is presented with the activities available to volunteers. The key findings indicate that most volunteers are young females that volunteer for a minimum of two weeks; are internally motivated to ‘give back and be useful’ and ‘to work with the white lions’ for the purpose of self-actualisation. External motivation is mainly social in terms of concern about the well-being of the lions, and South Africa being an economically affordable destination. The GWLPT strives to fulfil the needs of volunteers, especially intrinsic needs associated with self-actualisation and self-transcendence.

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

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.

The Western Denmark Cardiac Computed Tomography Registry

DEFF Research Database (Denmark)

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

2014-01-01

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...... examined the content, data quality, and research potential of the WDHR-CCTR. METHODS: We retrieved 2008-2012 data to examine the 1) content; 2) completeness of procedure registration using the Danish National Patient Registry as reference; 3) completeness of variable registration comparing observed vs...

Understanding the patient perspective on research access to national health records databases for conduct of randomized registry trials.

Science.gov (United States)

Avram, Robert; Marquis-Gravel, Guillaume; Simard, François; Pacheco, Christine; Couture, Étienne; Tremblay-Gravel, Maxime; Desplantie, Olivier; Malhamé, Isabelle; Bibas, Lior; Mansour, Samer; Parent, Marie-Claude; Farand, Paul; Harvey, Luc; Lessard, Marie-Gabrielle; Ly, Hung; Liu, Geoffrey; Hay, Annette E; Marc Jolicoeur, E

2018-07-01

Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. We assessed patient's preferences regarding use of personal information to link their research records with national health databases, as part of a hypothetical randomized registry trial. Cardiology patients were invited to complete an anonymous self-reported survey that ascertained preferences related to the concept of accessing government health databases for research, the type of personal identifiers to be shared and the type of follow-up preferred as participants in a hypothetical trial. A total of 590 responders completed the survey (90% response rate), the majority of which were Caucasians (90.4%), male (70.0%) with a median age of 65years (interquartile range, 8). The majority responders (80.3%) would grant researchers access to health administrative databases for screening and follow-up. To this end, responders endorsed the recording of their personal identifiers by researchers for future record linkage, including their name (90%), and health insurance number (83.9%), but fewer responders agreed with the recording of their social security number (61.4%, pgranting researchers access to the administrative databases (OR: 1.69, 95% confidence interval: 1.03-2.90; p=0.04). The majority of Cardiology patients surveyed were supportive of use of their personal identifiers to access administrative health databases and conduct long-term monitoring in the context of a randomized registry trial. Copyright © 2018 Elsevier Ireland Ltd. All rights reserved.

EMI Registry Design

CERN Document Server

Memon, S

2011-01-01

Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

Artificial Nutritional Support Registries: systematic review.

Science.gov (United States)

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

2009-01-01

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

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....

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....

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.

Safeguards for healthy volunteers in drug studies.

Science.gov (United States)

Smith, R N

1975-09-06

Safeguards for healthy volunteers in drug studies have not been as strict as those involving patients. The shortcomings include the lack of surveillance over the scientific validity of the protocol and its ethical review, and over the financial inducements to volunteers. Recruitment is open to abuse because the volunteers may have some allegiance to the investigators. There is an urgent need to institute checks on these aspects. Most important, however, is the lack of legal safeguards for volunteers taking part in research done outside the pharmaceutical industry. The suggested procedure for obtaining consent, for health checks, and for providing compensation can be equitable to all concerned, and yet not restrict initiative, nor curtail research aims.

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

Directory of Open Access Journals (Sweden)

Len Woodward

2016-11-01

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

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

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.

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.

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?

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.

Presenting an evaluation model of the trauma registry software.

Science.gov (United States)

Asadi, Farkhondeh; Paydar, Somayeh

2018-04-01

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

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.

Charting improvements in US registry HLA typing ambiguity using a typing resolution score.

Science.gov (United States)

Paunić, Vanja; Gragert, Loren; Schneider, Joel; Müller, Carlheinz; Maiers, Martin

2016-07-01

Unrelated stem cell registries have been collecting HLA typing of volunteer bone marrow donors for over 25years. Donor selection for hematopoietic stem cell transplantation is based primarily on matching the alleles of donors and patients at five polymorphic HLA loci. As HLA typing technologies have continually advanced since the beginnings of stem cell transplantation, registries have accrued typings of varied HLA typing ambiguity. We present a new typing resolution score (TRS), based on the likelihood of self-match, that allows the systematic comparison of HLA typings across different methods, data sets and populations. We apply the TRS to chart improvement in HLA typing within the Be The Match Registry of the United States from the initiation of DNA-based HLA typing to the current state of high-resolution typing using next-generation sequencing technologies. In addition, we present a publicly available online tool for evaluation of any given HLA typing. This TRS objectively evaluates HLA typing methods and can help define standards for acceptable recruitment HLA typing. Copyright © 2016 American Society for Histocompatibility and Immunogenetics. Published by Elsevier Inc. All rights reserved.

Volunteering and Volunteers: Benefit-Cost Analyses

Science.gov (United States)

Handy, Femida; Mook, Laurie

2011-01-01

This article examines the phenomenon of volunteering from a benefit-cost perspective. Both the individual making a decision to volunteer and the organization making a decision to use volunteer labor face benefits and costs of their actions, yet these costs and benefits almost always remain unarticulated, perhaps because the common perception of…

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.

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.

Second generation registry framework.

Science.gov (United States)

Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

2014-01-01

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

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.

Construction and management of ARDS/sepsis registry with REDCap.

Science.gov (United States)

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

2014-09-01

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

Volunteer Environmental Stewardship and Affective Labour in Philadelphia

Directory of Open Access Journals (Sweden)

Alec Foster

2018-01-01

Full Text Available Recent research has critically evaluated the rapid growth of volunteer urban environmental stewardship. Framings of this phenomenon have largely focused upon environmentality and/or neoliberal environments, unfortunately often presenting a totalising picture of the state and/or market utilising power from above to create environmental subjects with limited agency available to local citizens. Based upon qualitative research with volunteer urban environmental stewards in Philadelphia, affective labour is proposed as an alternative explanation for participation. Stewards volunteered their time and labour due to the intense emotional attachments they formed with their neighbourhoods, neighbours, and nonhuman others in relationships of affective labour. Volunteer urban environmental stewardship as affective labour provides room for agency on the part of individuals and groups involved in volunteer urban environmental reproduction and opens up new ways of relating to and being with human and nonhuman others.

Religiosity and Volunteering Intention Among Undergraduate Malaysian Muslim Students

OpenAIRE

Sallam A.A.A.; Abdullah S.; Ramli A.J .; Hussin N.S.; Ahmad Z.; Bahari A.

2018-01-01

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 ...

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

Science.gov (United States)

Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

Will Natural Resources Professionals Volunteer to Teach Youth?

Science.gov (United States)

Smith, Sanford S.; Finley, James C.; San Julian, Gary J.

2010-01-01

A unique approach to volunteer marketing research involved a mail survey with natural resources professionals from across Pennsylvania. Previous work identified this group as a source of potential volunteers for the 4-H youth natural resources program. The results give insights into those most likely to volunteer to teach youth through 4-H…

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…

Volunteer Motivations at a National Special Olympics Event

Science.gov (United States)

Khoo, Selina; Engelhorn, Rich

2011-01-01

Understanding the motivations for people to volunteer with the management and execution of major sporting events is important for the recruitment and retention of the volunteers. This research investigated volunteer motivations at the first National Special Olympics held in Ames, Iowa, USA in July 2006. A total of 289 participants completed the 28…

The Mid-Atlantic Twin Registry, revisited.

Science.gov (United States)

Lilley, Emily C H; Silberg, Judy L

2013-02-01

The Mid-Atlantic Twin Registry (MATR) is a population-based registry of more than 56,000 twins primarily born or living in Virginia, North Carolina, and South Carolina. The MATR employs several methods of ascertaining twins, and devotes considerable resources to tracking and maintaining communication with MATR participants. Researchers may utilize the MATR for administration of research services including study recruitment, collection of DNA, archival data set creation, as well as data collection through mailed, phone, or online surveys. In addition, the MATR houses the MATR Repository, with over 1,200 blood samples available for researchers interested in DNA genotyping. For over 35 years MATR twins have participated in research studies with investigators from diverse scientific disciplines and various institutions. These studies, which have resulted in numerous publications, have covered a range of topics, including the human microbiome, developmental psychopathology, depression, anxiety, substance use, epigenetics of aging, children of twins, pre-term birth, social attitudes, seizures, eating disorders, as well as sleep homeostasis. Researchers interested in utilizing twins are encouraged to contact the MATR to discuss potential research opportunities.

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...

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.

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.

Comparing sexual minority cancer survivors recruited through a cancer registry to convenience methods of recruitment.

Science.gov (United States)

Boehmer, Ulrike; Clark, Melissa A; Timm, Alison; Glickman, Mark; Sullivan, Mairead

2011-01-01

Sexual minority women, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, are not considered by cancer surveillance. This study assesses the representativeness of sexual minority breast cancer survivors, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, who were recruited into a convenience sample compared with a population-based registry sample of sexual minority breast cancer survivors. Long-term survivors of non-metastatic breast cancer who self-reported as sexual minority were recruited from a cancer registry and subsequently from the community using convenience recruitment methods. Sexual minority breast cancer survivors who screened eligible participated in a telephone survey about their quality of life and factors associated therewith. Participants in the convenience sample were similar to the registry-based sample with respect to adjustment to cancer, physical health, trust in physician, coping, social support, and sexual minority experiences. Compared with the convenience sample, breast cancer survivors in the registry sample were more likely married, more educated, diagnosed more recently, at an earlier stage of cancer, and more likely treated with breast-conserving surgery; they differed on adjuvant therapies. Because sexual minority breast cancer survivors who volunteered for the community-based sample shared most characteristics of the sample recruited from the cancer registry, we concluded that the community sample had comparable representational quality. In the absence of cancer surveillance of sexual minorities, thoughtful convenience recruitment methods provide good representational quality convenience samples. Copyright © 2011 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

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.

The Western Denmark Heart Registry

DEFF Research Database (Denmark)

Schmidt, Morten; Maeng, Michael; Madsen, Morten

2018-01-01

The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary interven......The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary...

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…

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.

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 ...

Volunteering with Newcomers: The Perspectives of Canadian- and Foreign-born Volunteers

Directory of Open Access Journals (Sweden)

Behnam Behnia

2012-12-01

Full Text Available Canadian- and foreign-born volunteers have contributed to the settlement of newcomers into Canadian society. Despite their important contribution, little has been reported about the experiences and perspectives of these volunteers. Using the information collected from face-to-face interviews with 60 Canadian- and foreign-born volunteers who support newcomers, this article discusses factors that motivate people to volunteer with newcomers. The study results revealed among other findings that (1 to become a volunteer, one not only needs to be motivated but also needs to believe that volunteering will produce the expected positive results and to have confidence in one’s ability to complete the assigned tasks, (2 once people become volunteers, the experience of volunteering tests their perceived self-efficacy and their belief about the effectiveness of their volunteer work. Success or failure in their expectations influences their decision tocontinue or discontinue their volunteer work.

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.

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

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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...

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 A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

2018-02-01

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

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.

[Drug evaluation in healthy volunteers. Legislative and ethical aspects].

Science.gov (United States)

Warot, D

1991-01-01

Studies in healthy volunteers have been legalized since December 20th 1988 in France. The healthy volunteer is employed for a variety of studies in phases I and IV of drug development. This type of research can equally be called nontherapeutic in nature. Every experiment involving healthy volunteers should be approved by the Ethics Committee. Using volunteers within the department, company or other organisation, while offering advantages for the investigator should be prohibited as freedom of concept might not be safeguarded. As well, financial incentives may over-persuade individuals, including students, who have low incomes and promote the "professional volunteer". To avoid this problem, French law planned a national register. The potential benefits of such a disposition are still unknown. Having been given appropriate information concerning the drug trial, his obligations and rights, the healthy volunteer gives his written consent. Specific recommendations for nontherapeutic assessments of drug effects are given concerning prisoners, the mentally handicapped, women with a risk of frequency, children. Ethical considerations concerning research on a healthy population must go beyond the law recently promulgated in France.

Workload and time management in central cancer registries: baseline data and implication for registry staffing.

Science.gov (United States)

Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

2012-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

Planning the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a Collaborative Pan-Stakeholder Critical Path Registry Model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

Science.gov (United States)

Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Packer, Douglas L; Ellenbogen, Kenneth A; Hammill, Stephen C; Natale, Andrea; Page, Richard L; Prystowsky, Eric; Jackman, Warren M; Stevenson, William G; Waldo, Albert L; Wilber, David; Kowey, Peter; Yaross, Marcia S; Mark, Daniel B; Reiffel, James; Finkle, John K; Marinac-Dabic, Danica; Pinnow, Ellen; Sager, Phillip; Sedrakyan, Art; Canos, Daniel; Gross, Thomas; Berliner, Elise; Krucoff, Mitchell W

2010-01-01

Atrial fibrillation (AF) is a major public health problem in the United States that is associated with increased mortality and morbidity. Of the therapeutic modalities available to treat AF, the use of percutaneous catheter ablation of AF is expanding rapidly. Randomized clinical trials examining the efficacy and safety of AF ablation are currently underway; however, such trials can only partially determine the safety and durability of the effect of the procedure in routine clinical practice, in more complex patients, and over a broader range of techniques and operator experience. These limitations of randomized trials of AF ablation, particularly with regard to safety issues, could be addressed using a synergistically structured national registry, which is the intention of the SAFARI. To facilitate discussions about objectives, challenges, and steps for such a registry, the Cardiac Safety Research Consortium and the Duke Clinical Research Institute, Durham, NC, in collaboration with the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, organized a Think Tank meeting of experts in the field. Other participants included the National Heart, Lung and Blood Institute, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, the Society of Thoracic Surgeons, the AdvaMed AF working group, and additional industry representatives. The meeting took place on April 27 to 28, 2009, at the US Food and Drug Administration headquarters in Silver Spring, MD. This article summarizes the issues and directions presented and discussed at the meeting. Copyright 2010 Mosby, Inc. All rights reserved.

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.

"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.

Uses and limitations of registry and academic databases.

Science.gov (United States)

Williams, William G

2010-01-01

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

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

Incidental findings in youths volunteering for brain MRI research.

Science.gov (United States)

Gur, R E; Kaltman, D; Melhem, E R; Ruparel, K; Prabhakaran, K; Riley, M; Yodh, E; Hakonarson, H; Satterthwaite, T; Gur, R C

2013-10-01

MRIs are obtained in research in healthy and clinical populations, and incidental findings have been reported. Most studies have examined adults with variability in parameters of image acquisition and clinical measures available. We conducted a prospective study of youths and documented the frequency and concomitants of incidental findings. Youths (n = 1400) with an age range from 8-23 years were imaged on the same 3T scanner, with a standard acquisition protocol providing 1.0 mm(3) isotropic resolution of anatomic scans. All scans were reviewed by an experienced board-certified neuroradiologist and were categorized into 3 groups: 1) normal: no incidental findings; 2) coincidental: incidental finding(s) were noted, further reviewed with an experienced pediatric neuroradiologist, but were of no clinical significance; 3) incidental findings that on further review were considered to have potential clinical significance and participants were referred for appropriate clinical follow-up. Overall, 148 incidental findings (10.6% of sample) were noted, and of these, 12 required clinical follow-up. Incidental findings were not related to age. However, whites had a higher incidence of pineal cysts, and males had a higher incidence of cavum septum pellucidum, which was associated with psychosis-related symptoms. Incidental findings, moderated by race and sex, occur in approximately one-tenth of participants volunteering for pediatric research, with few requiring follow-up. The incidence supports a 2-tiered approach of neuroradiologic reading and clinical input to determine the potential significance of incidental findings detected on research MR imaging scans.

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.

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…

A Phenomenological Look at 4-H Volunteer Motives for Service

Science.gov (United States)

Schrock, Jessalyn; Kelsey, Kathleen D.

2013-01-01

Volunteers play a vital role in 4-H programs. Without their service, many programs would not be possible. Understanding volunteer motives provides Extension educators with tools for finding high-quality volunteers. The research reported here used McClelland's (1985) framework for motivation (affiliation, achievement, and power) and…

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?

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.

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.

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

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.

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

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...

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

Science.gov (United States)

Nyaoke, Borna A; Mutua, Gaudensia N; Sajabi, Rose; Nyasani, Delvin; Mureithi, Marianne W; Anzala, Omu A

2017-01-01

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 clinical trials.

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

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.

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.

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…

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…

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.

Critical review of norovirus surrogates in food safety research: rationale for considering volunteer studies.

Science.gov (United States)

Richards, Gary P

2012-03-01

The inability to propagate human norovirus (NoV) or to clearly differentiate infectious from noninfectious virus particles has led to the use of surrogate viruses, like feline calicivirus (FCV) and murine norovirus-1 (MNV), which are propagatable in cell culture. The use of surrogates is predicated on the assumption that they generally mimic the viruses they represent; however, studies are proving this concept invalid. In direct comparisons between FCV and MNV, their susceptibility to temperatures, environmental and food processing conditions, and disinfectants are dramatically different. Differences have also been noted between the inactivation of NoV and its surrogates, thus questioning the validity of surrogates. Considerable research funding is provided globally each year to conduct surrogate studies on NoVs; however, there is little demonstrated benefit derived from these studies in regard to the development of virus inactivation techniques or food processing strategies. Human challenge studies are needed to determine which processing techniques are effective in reducing NoVs in foods. A major obstacle to clinical trials on NoVs is the perception that such trials are too costly and risky, but in reality, there is far more cost and risk in allowing millions of unsuspecting consumers to contract NoV illness each year, when practical interventions are only a few volunteer studies away. A number of clinical trials have been conducted, providing important insights into NoV inactivation. A shift in research priorities from surrogate research to volunteer studies is essential if we are to identify realistic, practical, and scientifically valid processing approaches to improve food safety.

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

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.

Science.gov (United States)

Burisch, Johan; Gisbert, Javier P; Siegmund, Britta; Bettenworth, Dominik; Thomsen, Sandra Bohn; Cleynen, Isabelle; Cremer, Anneline; Ding, Nik John Sheng; Furfaro, Federica; Galanopoulos, Michail; Grunert, Philip Christian; Hanzel, Jurij; Ivanovski, Tamara Knezevic; Krustins, Eduards; Noor, Nurulamin; O'Morain, Neil; Rodríguez-Lago, Iago; Scharl, Michael; Tua, Julia; Uzzan, Mathieu; Ali Yassin, Nuha; Baert, Filip; Langholz, Ebbe

2018-04-27

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. Nineteen observers entered five patient case histories into the database. After 6 weeks, all observers entered the same case histories again. For each case history, 20 key variables were selected to calculate the accuracy for each observer. We assumed that the database was such that ≥ 90% of the entered data would be correct. The overall proportion of correctly entered data was calculated using a beta-binomial regression model to account for inter-observer variation and compared to the expected level of validity. Re-test reliability was assessed using McNemar's test. 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% [94-99%]; Case 5: 91% [87-93%]). These numbers did not differ significantly from those found 6 weeks later [NcNemar's test p > 0.05]. The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR-CARE has the potential to enhance future European collaborations regarding clinical research in IBD.

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.

Who volunteers in psychology experiments? An empirical review of prosocial motivation in volunteering

NARCIS (Netherlands)

van Lange, P.A.M.; Schippers, M.C.; Balliet, D.P.

2011-01-01

The central purpose of the present research is to provide a review of social value orientation (i.e., prosocial, individualistic, and competitive orientation), a construct measured with methods rooted in game theory (i.e., decomposed games). Also, we examine its ability to predict volunteering in

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.

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…

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...

HLA Match Likelihoods for Hematopoietic Stem-Cell Grafts in the U.S. Registry

Science.gov (United States)

Gragert, Loren; Eapen, Mary; Williams, Eric; Freeman, John; Spellman, Stephen; Baitty, Robert; Hartzman, Robert; Rizzo, J. Douglas; Horowitz, Mary; Confer, Dennis; Maiers, Martin

2018-01-01

Background Hematopoietic stem-cell transplantation (HSCT) is a potentially lifesaving therapy for several blood cancers and other diseases. For patients without a suitable related HLA-matched donor, unrelated-donor registries of adult volunteers and banked umbilical cord–blood units, such as the Be the Match Registry operated by the National Marrow Donor Program (NMDP), provide potential sources of donors. Our goal in the present study was to measure the likelihood of finding a suitable donor in the U.S. registry. Methods Using human HLA data from the NMDP donor and cord-blood-unit registry, we built population-based genetic models for 21 U.S. racial and ethnic groups to predict the likelihood of identifying a suitable donor (either an adult donor or a cord-blood unit) for patients in each group. The models incorporated the degree of HLA matching, adult-donor availability (i.e., ability to donate), and cord-blood-unit cell dose. Results Our models indicated that most candidates for HSCT will have a suitable (HLA-matched or minimally mismatched) adult donor. However, many patients will not have an optimal adult donor — that is, a donor who is matched at high resolution at HLA-A, HLA-B, HLA-C, and HLA-DRB1. The likelihood of finding an optimal donor varies among racial and ethnic groups, with the highest probability among whites of European descent, at 75%, and the lowest probability among blacks of South or Central American descent, at 16%. Likelihoods for other groups are intermediate. Few patients will have an optimal cord-blood unit — that is, one matched at the antigen level at HLA-A and HLA-B and matched at high resolution at HLA-DRB1. However, cord-blood units mismatched at one or two HLA loci are available for almost all patients younger than 20 years of age and for more than 80% of patients 20 years of age or older, regardless of racial and ethnic background. Conclusions Most patients likely to benefit from HSCT will have a donor. Public investment in

[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.

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.

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

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. 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. 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. 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.

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

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…

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.

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.

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.

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...

Demographics of US pediatric contact dermatitis registry providers.

Science.gov (United States)

Goldenberg, Alina; Jacob, Sharon E

2015-01-01

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

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.

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 motivation. Value-expressive volunteer motivation and religiosity were significant (p motivation and volunteering (p 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.

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.

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

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

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.

Regional Cancer Registries – 20 Years and Growing

Science.gov (United States)

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

CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia.

Science.gov (United States)

Venuthurupalli, Sree K; Hoy, Wendy E; Healy, Helen G; Cameron, Anne; Fassett, Robert G

2017-06-07

Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries. In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE]. The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.

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)

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.

Standardized cardiovascular data for clinical research, registries, and patient care: a report from the Data Standards Workgroup of the National Cardiovascular Research Infrastructure project.

Science.gov (United States)

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

2013-05-07

Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nonetheless, these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the 2 major technical standards organizations in health care, the Clinical Data Interchange Standards Consortium and Health Level Seven International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care

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.

Danish Hip Arthroscopy Registry

DEFF Research Database (Denmark)

Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels

2016-01-01

Danish Hip Arthroscopy Registry (DHAR) was initiated in 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the epidemiologic and perioperative data of the first 2000 procedures in a Danish hip arthroscopy population and to describe the development of DHAR...... was 0.65 and HAGOS sub-scores were 51 (pain), 49 (symptoms), 53 (ADL), 35 (sport), 20 (physical activity) and 29, respectively. We conclude that patients undergoing hip arthroscopy report considerable pain, loss of function, reduced level of activity and reduced quality-of-life prior to surgery....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...

The Effect of Message Framing on African American Women's Intention to Participate in Health-Related Research.

Science.gov (United States)

Balls-Berry, Joyce E; Hayes, Sharonne; Parker, Monica; Halyard, Michele; Enders, Felicity; Albertie, Monica; Pinn, Vivian; Radecki Breitkopf, Carmen

2016-05-01

This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research.

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.

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.

The role sports volunteering in the life of university students

Directory of Open Access Journals (Sweden)

Anastasia Bondar

2015-12-01

Full Text Available Purpose: identify the role sports volunteering in the life of university students. Material and Methods: 256 students of the Kharkov state academy of physical culture took part in research. The analysis of literary sources and documents was utillized; questioning (questionnaire, methods of the mathematical processing of data. Conclusions: sports volunteering is inalienable part of life of modern students and the 35% polled already were in a position to prove as helpers of organizers of sporting competitions of different level. In opinion of students, volunteering enables them to purchase experience of public activity, so the 25% polled consider, to find new friends – 20,8%, realized themselves – 18,3%. 34,5% respondents consider it-volunteering perspective direction the volunteers activity, the here 32,4% polled would like to prove as counsels of all of sporting volunteers work assignments

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.

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.

Assessing Completeness and Spatial Error of Features in Volunteered Geographic Information

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Anthony Stefanidis

2013-06-01

Full Text Available The assessment of the quality and accuracy of Volunteered Geographic Information (VGI contributions, and by extension the ultimate utility of VGI data has fostered much debate within the geographic community. The limited research to date has been focused on VGI data of linear features and has shown that the error in the data is heterogeneously distributed. Some have argued that data produced by numerous contributors will produce a more accurate product than an individual and some research on crowd-sourced initiatives has shown that to be true, although research on VGI is more infrequent. This paper proposes a method for quantifying the completeness and accuracy of a select subset of infrastructure-associated point datasets of volunteered geographic data within a major metropolitan area using a national geospatial dataset as the reference benchmark with two datasets from volunteers used as test datasets. The results of this study illustrate the benefits of including quality control in the collection process for volunteered data.

Volunteering for charity: pride, respect, and the commitment of volunteers.

Science.gov (United States)

Boezeman, Edwin J; Ellemers, Naomi

2007-05-01

This study builds upon and extends the social-identity-based model of cooperation with the organization (T. R. Tyler, 1999; T. R. Tyler & S. L. Blader, 2000) to examine commitment and cooperative intent among fundraising volunteers. In Study 1, structural equation modeling indicated that pride and respect related to the intent to remain a volunteer with an organization, and that this relation was mediated primarily by normative organizational commitment. In Study 2, structural equation modeling indicated that the perceived importance of volunteer work was related to pride, that perceived organizational support related to the experience of respect, and that pride and respect mediated the relation between perceived importance and support on the one hand and organizational commitment on the other. Overall, the results suggest that volunteer organizations may do well to implement pride and respect in their volunteer policy, for instance to address the reliability problem (J. L. Pearce, 1993). 2007 APA, all rights reserved

Immunization registries in the EMR Era

Science.gov (United States)

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

2013-01-01

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

"Communication is everything:" The experiences of volunteers who use AAC.

Science.gov (United States)

Trembath, David; Balandin, Susan; Stancliffe, Roger J; Togher, Leanne

2010-06-01

The aim of this study was to explore the impact that using augmentative and alternative communication (AAC) had on the experiences of 24 adults with lifelong disabilities who worked as volunteers. This research forms part of a larger qualitative study of volunteering amongst adults who use AAC. Based on in-depth interviews and grounded theory analysis, the results indicate that communication is central to successful volunteering and, in particular, that access to AAC has the potential to provide valuable support to individuals with complex communication needs who want to volunteer. However, a number of barriers must be addressed in order for this potential to be achieved. Strategies for promoting and supporting adults who use AAC and want to volunteer are discussed.

Volunteer Tourism in Japan: Its Potential in Transforming “Non-volunteers” to Volunteers

OpenAIRE

Yoda, Mami

2010-01-01

This paper explores the potential of volunteer tourism to transform “non-volunteers” to volunteers in Japan. Volunteer tourism is defined as travel to a location outside the immediate vicinity of daily life in order to engage in organized volunteer activities.　In-depth interviews and a survey were conducted to the employees of Haagen-Dazs Japan, Inc., who participated to volunteer tours to the Kiritappu Wetland Trust in Hokkaido. The study closely examines the motivations of the participants...

Motives for Volunteering: Categorization of Volunteers' Motivations Using Open-ended Questions

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Fernando Chacón

2010-12-01

Full Text Available Most studies of volunteers’ motivations use standardized questionnaires with one of the most commonly-used being the Volunteer Function Inventory. Open-ended questions about what drives individuals to be volunteers are seldom used. We hypothesize that questionnaires tend to overestimate the number of motivations and to underestimate their variety. Therefore, in this paper we analyze the answers of 1515 volunteers to an open-ended question and categorize these answers. Results show that volunteers give an average of 2 motivations, fewer than the questionnaires, and that the Value motivation is the most frequently mentioned and the most important for volunteers. In addition, this motivation coexists with other motivations, which are lacking in the standard questionnaires, such as Organizational Commitment, Personal Development, Religiosity, Social Change or Interest in the Activity.

A Registry Framework Enabling Patient-Centred Care.

Science.gov (United States)

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

2015-01-01

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

Volunteering in dementia care – a Norwegian phenomenological study

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Söderhamn U

2012-02-01

Full Text Available Ulrika Söderhamn1, Bjørg Landmark2,3, Live Aasgaard2, Hilde Eide3, Olle Söderhamn11Center for Caring Research – Southern Norway, Faculty of Health and Sport Sciences, University of Agder, Grimstad, Norway; 2Institute of Research and Development for Nursing and Care Services, Municipality of Drammen, Drammen, Norway; 3Faculty of Health Sciences, Buskerud University College, Drammen, NorwayIntroduction: The number of people suffering from dementia will increase dramatically in the future, and this will be a great challenge and concern for health care services. It is assumed that volunteers will strengthen community health care services more in the future than they do today.Aim: The aim of this study was to elucidate lived experiences of working as a volunteer in an activity center with adapted activities for home-dwelling people with early stage dementia.Methods: Qualitative interviews were implemented in a group of nine female volunteers from an activity center in southern Norway. The interviews were recorded, transcribed verbatim, and analyzed with a descriptive phenomenological method. Results: Volunteering in an activity center for home-dwelling people with early stage dementia was reported to provide experiences of being useful and feeling satisfied with performing a good job. It was an advantage for the volunteers to have had experiences from life in general, but also as a health professional or as being the next of kin of a dementia sufferer. It was important for the volunteers to focus on the dementia sufferer and show caring behavior, and interaction with and the appreciation of the health care professionals were also important. The volunteers were motivated by being able to have influence and participate in the planning of the work, to be a part of the social setting, and to learn. However, for some volunteers it was difficult to adjust to an appropriate role.Conclusion: In order to promote volunteering in a caring context, mutual

Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

Science.gov (United States)

Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

2017-11-28

Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

Registries in European post-marketing surveillance

DEFF Research Database (Denmark)

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

2017-01-01

at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. METHODS: European Public Assessment Reports were consulted to identify products for which a request...

Contextualized B2B Registries

OpenAIRE

Radetzki, U; Boniface, M.J.; Surridge, M.

2007-01-01

Abstract. Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into busi-ness relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. In this paper we present a novel contextualized B2B registry that supports dynamic regist...

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

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.

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.

An analysis of contextual information relevant to medical care unexpectedly volunteered to researchers by asthma patients.

Science.gov (United States)

Black, Heather L; Priolo, Chantel; Gonzalez, Rodalyn; Geer, Sabrina; Adam, Bariituu; Apter, Andrea J

2012-09-01

To describe and categorize contextual information relevant to patients' medical care unexpectedly volunteered to research personnel as part of a patient advocate (PA) intervention to facilitate access health care, communication with medical personnel, and self-management of a chronic disease such as asthma. We adapted a patient navigator intervention, to overcome barriers to access and communication for adults with moderate or severe asthma. Informed by focus groups of patients and providers, our PAs facilitated preparation for a visit with an asthma provider, attended the visit, confirmed understanding, and assisted with post-visit activities. During meetings with researchers, either for PA activities or for data collection, participants frequently volunteered personal and medical information relevant for achieving successful self-management that was not routinely shared with medical personnel. For this project, researchers journaled information not captured by the structured questionnaires and protocol. Using a qualitative analysis, we describe (1) researchers' journals of these unique communications; (2) their relevance for accomplishing self-management; (3) PAs' formal activities including teach-back, advocacy, and facilitating appointment making; and (4) observations of patients' interactions with the clinical practices. In 83 journals, patients' social support (83%), health (68%), and deportment (69%) were described. PA assistance with navigating the medical system (59%), teach-back (46%), and observed interactions with patient and medical staff (76%) were also journaled. Implicit were ways patients and practices could overcome barriers to access and communication. These journals describe the importance of seeking contextual and medically relevant information from all patients and, especially, those with significant morbidities, prompting patients for barriers to access to health care, and confirming understanding of medical information.

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

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.

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

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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.

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.

Poor retention does not have to be the rule: retention of volunteer community health workers in Uganda.

Science.gov (United States)

Ludwick, Teralynn; Brenner, Jennifer L; Kyomuhangi, Teddy; Wotton, Kathryn A; Kabakyenga, Jerome Kahuma

2014-05-01

Globally, health worker shortages continue to plague developing countries. Community health workers are increasingly being promoted to extend primary health care to underserved populations. Since 2004, Healthy Child Uganda (HCU) has trained volunteer community health workers in child health promotion in rural southwest Uganda. This study analyses the retention and motivation of volunteer community health workers trained by HCU. It presents retention rates over a 5-year period and provides insight into volunteer motivation. The findings are based on a 2010 retrospective review of the community health worker registry and the results of a survey on selection and motivation. The survey was comprised of qualitative and quantitative questions and verbally administered to a convenience sample of project participants. Between February 2004 and July 2009, HCU trained 404 community health workers (69% female) in 175 villages. Volunteers had an average age of 36.7 years, 4.9 children and some primary school education. Ninety-six per cent of volunteer community health workers were retained after 1 year (389/404), 91% after 2 years (386/404) and 86% after 5 years (101/117). Of the 54 'dropouts', main reasons cited for discontinuation included 'too busy' (12), moved (11), business/employment (8), death (6) and separation/divorce (6). Of 58 questionnaire respondents, most (87%) reported having been selected at an inclusive community meeting. Pair-wise ranking was used to assess the importance of seven 'motivational factors' among respondents. Those highest ranked were 'improved child health', 'education/training' and 'being asked for advice/assistance by peers', while the modest 'transport allowance' ranked lowest. Our findings suggest that in our rural, African setting, volunteer community health workers can be retained over the medium term. Community health worker programmes should invest in community involvement in selection, quality training, supportive supervision and

Managing Volunteers.

Science.gov (United States)

Geber, Beverly

1991-01-01

Discusses changing nature of volunteers in Peter Drucker's book "Managing the Nonprofit Corporation." Points out that most volunteers have full-time jobs, families, very little leisure; they are not willing to do such routine work as stuffing envelopes; they want carefully defined projects with beginning and end. Discusses real…

Developing a survey instrument to assess the readiness of primary care data, genetic and disease registries to conduct linked research: TRANSFoRm International Research Readiness (TIRRE survey instrument

Directory of Open Access Journals (Sweden)

Emily Leppenwell

2013-05-01

Full Text Available Background Clinical data are collected for routine care in family practice; there are also a growing number of genetic and cancer registry data repositories. The Translational Research and Patient Safety in Europe (TRANSFoRm project seeks to facilitate research using linked data from more than one source. We performed a requirements analysis which identified a wide range of data and business process requirements that need to be met before linking primary care and either genetic or disease registry data.Objectives To develop a survey to assess the readiness of data repositories to participate in linked research – the Transform International Research Readiness (TIRRE survey.Method We develop the questionnaire based on our requirement analysis; with questions at micro-, meso- and macro levels of granularity, study-specific questions about diabetes and gastro-oesophageal reflux disease (GORD, and research track record. The scope of the data required was extensive. We piloted this instrument, conducting ten preliminary telephone interviews to evaluate the response to the questionnaire.Results Using feedback gained from these interviews we revised the questionnaire; clarifying questions that were difficult to answer and utilising skip logic to create different series of questions for the various types of data repository. We simplified the questionnaire replacing free-text responses with yes/no or picking list options, wherever possible. We placed the final questionnaire online and encouraged its use (www.clininf.eu/jointirre/info.html.Conclusion Limited field testing suggests that TIRRE is capable of collecting comprehensive and relevant data about the suitability and readiness of data repositories to participate in linked data research.

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

Science.gov (United States)

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

2009-01-01

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

[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.

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.

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 me...

Upgraded national occupational dose registry system - implementation of Phase-II programme

International Nuclear Information System (INIS)

Sanaye, S.S.; Baburajan, Sujatha; Johnson, Seethal; Nalawade, S.K.; Tudu, S.C.; Khedekar, B.M.; Sapra, B.K.; Datta, D.

2016-01-01

National Occupational Dose Registry System (NODRS) of Bhabha Atomic Research Centre maintains and updates occupational dose data of all monitored radiation workers in the country. The registry was upgraded in 2008 by establishing networked NODRS system through which personnel monitoring labs at different nuclear installations were networked with main dose registry server using the departmental ANUNET and NPCNET facilities. This has facilitated online allotment of personal numbers, storing of biometric information as well as providing online dose information to respective Health Physics Units (HPUs). On the basis of operational experience of NODRS and its feedback from users, Phase-II program was designed, developed and implemented. The paper gives an overview of implementation of this program at various sites

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

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.

Motivation of youth participation in the volunteer movement

OpenAIRE

Tamara Nezhina; Kseniya Petukhova; Natal'ya Chechetkina; Il'ziya Mindarova

2014-01-01

The purpose of this study was to determine existing practices of young volunteer recruitment, retention and motivation in Russian noncommercial and government organizations and compare them with the best practices in American organizations. To know this information is essential for government managers and NGO leaders to successfully attract and retain young people as volunteers in their organizations. The theories of economic man and altruistic man have shaped the methodology and research des...

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.

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.

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...

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.

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.

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 ...

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.

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

OpenAIRE

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 completion of secondary school were measured. Mixed effect logistic regression analyses revealed that adolescent volunteering was associated with an in...

EMI Registry Development Plan

CERN Document Server

Memon, S.; Szigeti, G.; Field, L.

2012-01-01

This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.

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.

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

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.

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...

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

Establishment of the Fox Chase Network Breast Cancer Risk Registry

National Research Council Canada - National Science Library

Daly, Mary

1997-01-01

.... The development of the Fox Chase Cancer Center Breast Cancer Risk Registry was proposed to facilitate research in the epidemiologic and genetic predictors of disease and will permit evaluation...

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

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.

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

Volunteer Team Management

OpenAIRE

Monych, Maria

2015-01-01

This thesis looked into volunteer team management in a project in AIESEC in Finland through the action research method. AIESEC in Finland is a non-profit non-government organization with a purpose of “peace and fulfilment of humankinds potential” through development of the youth’s future leadership. AIESEC was not a commissioning party; the project was the basis for the thesis without the supervision of the company. The thesis is based on a project that the author was in charge of, in ...

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

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

Directory of Open Access Journals (Sweden)

Ostraat ML

2013-09-01

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

Volunteering and Organizational Diversity

DEFF Research Database (Denmark)

Henriksen, Lars Skov; Rosdahl, David

2008-01-01

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...

Existing data sources for clinical epidemiology: the Danish National Pathology Registry and Data Bank

DEFF Research Database (Denmark)

Erichsen, Rune; Lash, Timothy L; Hamilton-Dutoit, Stephen J

2010-01-01

Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective epidemiol......Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective...... epidemiological studies to be carried out. Such studies are of significant importance, for example in the search for novel prognostic and predictive biomarkers in the era of personalized medicine. Denmark has a wealth of highly-regarded population-based registries that are ideally suited to conduct this type...

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.

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

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...

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

Directory of Open Access Journals (Sweden)

Sanson-Fisher Rob

2011-01-01

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

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.

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

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…

Do monetary rewards undermine intrinsic motivations of volunteers? Some empirical evidence for Italian volunteers

OpenAIRE

Fiorillo, Damiano

2007-01-01

Empirical studies show that intrinsic motivations increase the volunteer labour supply. This paper studies how monetary rewards to volunteers affect their intrinsic motivations. Using a sample of Italian volunteers, allowing to distinguish the type of volunteer, the paper shows that monetary rewards (extrinsic motivations) influence positively the choice to donate voluntary hours, while a low intrinsic motivation seems to decrease hours per week. Moreover, monetary rewards increase the hours ...

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

Science.gov (United States)

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-06-01

The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

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

Science.gov (United States)

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

2011-09-12

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

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

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) data from DHAR between January 2012 and November 2015 were extracted. Radiological pincer-type FAI was defined as LCE > 35° and cam FAI as alpha-angle > 55°. These data were combined with FAI surgical data such as osteochondroplasty and labral repair or resection. PROMs consisting of HAGOS, EQ-5 D...

Gender and religious differences associated with volunteering in later life.

Science.gov (United States)

Manning, Lydia K

2010-01-01

The purpose of this study is to use a nationally representative sample of older adults in the United States to investigate the effect gender and religiosity has on volunteer behavior in later life. This study looks specifically at the gender and religious differences associated with volunteering in later life. Accounting for gender and religious differences, more specifically, this study examines the assumption that older women are more likely to volunteer in later life as opposed to men, and that gender is a better predictor than being religious for the likelihood of occupying a volunteer role in later life. This study poses questions about the differences in gender and religiosity associated with volunteering in later life; the results indicate there is more work to be done as we conduct research that is clearer about how volunteerism and religiosity are measured in relation to gender, and the overall impact these differences have for older women and their respective communities.

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

Science.gov (United States)

2011-11-23

... particular tests; and (3) facilitating genetic and genomic data-sharing for research and new scientific...; Comment Request Information Program on the Genetic Testing Registry AGENCY: National Institutes of Health... currently valid OMB control number. Proposed Collection: Title: The Genetic Testing Registry; Type of...

Crowdsourcing Analysis of Twitter Data on Climate Change: Paid Workers vs. Volunteers

Directory of Open Access Journals (Sweden)

Andrei P. Kirilenko

2017-11-01

Full Text Available Web based crowdsourcing has become an important method of environmental data processing. Two alternatives are widely used today by researchers in various fields: paid data processing mediated by for-profit businesses such as Amazon’s Mechanical Turk, and volunteer data processing conducted by amateur citizen-scientists. While the first option delivers results much faster, it is not quite clear how it compares with volunteer processing in terms of quality. This study compares volunteer and paid processing of social media data originating from climate change discussions on Twitter. The same sample of Twitter messages discussing climate change was offered for processing to the volunteer workers through the Climate Tweet project, and to the paid workers through the Amazon MTurk platform. We found that paid crowdsourcing required the employment of a high redundancy data processing design to obtain quality that was comparable with volunteered processing. Among the methods applied to improve data processing accuracy, limiting the geographical locations of the paid workers appeared the most productive. Conversely, we did not find significant geographical differences in the accuracy of data processed by volunteer workers. We suggest that the main driver of the found pattern is the differences in familiarity of the paid workers with the research topic.

Exploring the Relationship Between Public Service Motivation and Formal and Informal Volunteering

Directory of Open Access Journals (Sweden)

Richard M. Clerkin

2017-03-01

Full Text Available In this paper, we apply public service motivation to the ongoing discussion of formal and informal volunteering and whether these are two distinct constructs or variations on the same theme. This exploratory research uses survey data of undergraduate students reporting their participation in both types of volunteering activities. Using structural equation modeling, these formal and informal volunteering activities show different influences on three dimensions of PSM. In addition to PSM, high school volunteering and religiosity have direct effects on rates of formal volunteering, which in turn positively influence the PSM dimensions of civic duty and self-sacrifice. Being an Evangelical Christian is associated with increased informal volunteering, which is positively related to the PSM compassion dimension. These results indicate that the different dimensions of PSM, and how formal and informal volunteering influences them, should be useful tools for scholars and practitioners seeking to understand these distinct types of pro-social behaviors.

Motivation and volunteer participation in the «Athens 2004» Olympic Games

Directory of Open Access Journals (Sweden)

THEODOROS GEORGIADIS

2006-01-01

Full Text Available The present research tackles the topic of motives as they are developed by volunteers –who offer time-consuming services without expecting any material gains– and specifically the Olympic Volunteers of «Athens 2004». Four hundred-thirty (N = 430 volunteers completed the Scale of Motives, that was adapted in Greek from the functional approach of Omoto et al. (1993 and Chacon et al. (1998, aiming mainly at the testing of the hypothesis that the motives of volunteers who have previous volunteering experience, but also of those who wish (or continue to volunteer after the completion the Olympic Games, will differ from the motives of those volunteers who have not volunteered in the past or who do not aim at providing voluntary work in the future. The results supported the hypothesis, while the modified Greek scale offered high internal consistencies and strong indications of validity. The future review and reapplication of the design of the adapted questionnaire of Motives will likely eliminate any potential weaknesses and will allow the scale to reach full applicability.

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.

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.

Exploring the Impact of Online Training Design on Volunteer Motivation and Intention to Act

Science.gov (United States)

Frendo, Molly

2017-01-01

Prior research on volunteer training suggests that in-person options are the best way to support volunteer skill development and motivation. Until fairly recently, face-to-face training was the only choice for volunteer training beyond individual self-study through books and manuals. Due to lack of resources and an increased accessibility of…

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...

International Consortium of Vascular Registries Consensus Recommendations for Peripheral Revascularisation Registry Data Collection

DEFF Research Database (Denmark)

Behrendt, Christian-Alexander; Bertges, Daniel; Eldrup, Nikolaj

2018-01-01

intervention; (ix) complications; and (x) follow up. CONCLUSION: A modified Delphi study allowed 25 international vascular registry experts to achieve a consensus recommendation for a minimum core data set and an optimum data set for peripheral arterial revascularisation registries. Continued global...... via internet exchange and face to face discussions. In total, 187 different items from the various registry data forms were identified for potential inclusion in the recommended data set. Ultimately, 79 items were recommended for inclusion in minimum core data sets, including 65 items in the level 1...... data set, and an additional 14 items in the more specific level 2 and 3 recommended data sets. Data elements were broadly divided into (i) patient characteristics; (ii) comorbidities; (iii) current medications; (iv) lesion treated; (v) procedure; (vi) bypass; (vii) endarterectomy (viii) catheter based...

Environmental volunteer well-being: Managers’ perception and actual well-being of volunteers [version 1; referees: 2 approved

Directory of Open Access Journals (Sweden)

Gitte Kragh

2016-11-01

Full Text Available 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

The EuroMyositis registry: an international collaborative tool to facilitate myositis research.

Science.gov (United States)

Lilleker, James B; Vencovsky, Jiri; Wang, Guochun; Wedderburn, Lucy R; Diederichsen, Louise Pyndt; Schmidt, Jens; Oakley, Paula; Benveniste, Olivier; Danieli, Maria Giovanna; Danko, Katalin; Thuy, Nguyen Thi Phuong; Vazquez-Del Mercado, Monica; Andersson, Helena; De Paepe, Boel; deBleecker, Jan L; Maurer, Britta; McCann, Liza J; Pipitone, Nicolo; McHugh, Neil; Betteridge, Zoe E; New, Paul; Cooper, Robert G; Ollier, William E; Lamb, Janine A; Krogh, Niels Steen; Lundberg, Ingrid E; Chinoy, Hector

2018-01-01

The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtypes, extramuscular involvement, environmental exposures and medications were investigated. Of 3067 IIM cases, 69% were female. The most common IIM subtype was dermatomyositis (DM) (31%). Smoking was more frequent in connective tissue disease overlap cases (45%, OR 1.44, 95% CI 1.09 to 1.90, p=0.012). Smoking was associated with interstitial lung disease (ILD) (OR 1.32, 95% CI 1.06 to 1.65, p=0.013), dysphagia (OR 1.43, 95% CI 1.16 to 1.77, p=0.001), malignancy ever (OR 1.78, 95% CI 1.36 to 2.33, p<0.001) and cardiac involvement (OR 2.40, 95% CI 1.60 to 3.60, p<0.001).Dysphagia occurred in 39% and cardiac involvement in 9%; either occurrence was associated with higher Health Assessment Questionnaire (HAQ) scores (adjusted OR 1.79, 95% CI 1.43 to 2.23, p<0.001). HAQ scores were also higher in inclusion body myositis cases (adjusted OR 3.85, 95% CI 2.52 to 5.90, p<0.001). Malignancy (ever) occurred in 13%, most commonly in DM (20%, OR 2.06, 95% CI 1.65 to 2.57, p<0.001).ILD occurred in 30%, most frequently in antisynthetase syndrome (71%, OR 10.7, 95% CI 8.6 to 13.4, p<0.001). Rash characteristics differed between adult-onset and juvenile-onset DM cases ('V' sign: 56% DM vs 16% juvenile-DM, OR 0.16, 95% CI 0.07 to 0.36, p<0.001). Glucocorticoids were used in 98% of cases, methotrexate in 71% and azathioprine in 51%. This large multicentre cohort demonstrates the importance of extramuscular involvement in patients with IIM, its association with smoking and its influence on disease severity. Our findings emphasise that IIM is a multisystem inflammatory disease and will help inform prognosis and clinical management of patients. © Article author(s) (or their employer(s) unless otherwise stated

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.

Volunteer Functions Inventory: A systematic review.

Science.gov (United States)

Chacón, Fernando; Gutiérrez, Gema; Sauto, Verónica; Vecina, María L; Pérez, Alfonso

2017-08-01

The objective of this research study was to conduct a systematic review of the research on volunteers using Clary et al.’s VFI (1998). A total of 48 research studies including 67 independent samples met eligibility criteria. The total sample of the studies analyzed ranged from 20375 to 21988 participants, depending on the motivation analyzed. The results show that the Values factor obtained the highest mean score, both overall and in each type of volunteering, whereas the lowest scores were for the Career and Enhancement factors. Studies conducted with samples with a mean age under 40 years obtain higher scores on Career and Understanding scales when compared to studies in older samples. The group of studies with less than 50% women yield higher mean scores on the Social scale than studies with more than 50% women in the sample. All the scales show reliability coefficients between .78 and .84. Only eight of the articles provide data on the reliability of the scale with a mean value of .90. Of the 26 studies that performed factor analysis, 18 confirmed the original structure of six factors.

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

[The user´s reporting from the national registry of catheter aortic valve implantations (Czech TAVI Registry): the possibilities of the analytical reports based on the database system TrialDB2].

Science.gov (United States)

Bláha, Milan; Kala, Petr; Klimeš, Daniel; Bernat, Ivo; Branny, Marian; Cervinka, Pavel; Horák, Jan; Kočka, Viktor; Mates, Martin; Němec, Petr; Pešl, Ladislav; Stípal, Roman; Sťásek, Josef; Zelízko, Michael

2014-10-01

Assessment of the treatment procedures and their results is increasingly important in current medicine. The emphasis is put on an effective use of the health technologies (HTA). Unlike randomised studies, which involve strictly selected groups of patients who meet inclusion and exclusion criterias, the multicentre clinical registries provide a real-life picture of the treatment safety and effectiveness. Well prepared registries involve both research database and a friendly user interface enabling collection of parametric and easily analyzable data. Although there are some technological aspects aiming to ensure a maximum quality of entered data, cooperation with the users and data managers is essential. Such a registry, otherwise meaningful, must provide answers to previously defined medical hypotheses. Regular feedback to users (so called benchmarking or reporting) is considered to be of key importance. The Czech TAVI Registry (CTR) is a good example of reaching all of the above defined criterias. This registry contains data of approximately 95 % of all transcatheter aortic valve implantations (TAVI) performed in the Czech Republic. It is based on a general system aimed at the design of clinical trials, namely the TrialDB2 (a database system for clinical registries developed by the Institute of Biostatistics and Analyses at the Masaryk University (IBA MU). CTR has been run as an English-language version under the auspices of the Czech Society of Cardiology and represents one of the top-quality registries maintained by IBA MU. This paper presents the currently available database systems and some reports from this particular registry.

14 CFR 47.19 - FAA Aircraft Registry.

Science.gov (United States)

2010-01-01

... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19... REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other communication sent to the FAA under this Part must be mailed to the FAA Aircraft Registry, Department of...

14 CFR 49.11 - FAA Aircraft Registry.

Science.gov (United States)

2010-01-01

... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11... AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for recording, a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post Office...

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

Class diversity and youth volunteering in the UK : applying Bourdieu's habitus and cultural capital

OpenAIRE

Dean, Jonathan

2015-01-01

This article utilizes Pierre Bourdieu’s theories of habitus and cultural capital to offer some explanation as to why there is a lack of class diversity in formal volunteering in the United Kingdom. Recent studies have shown that participation in volunteering is heavily dependent on social class revolving around a highly committed middle-class “civic core” of volunteers. This article draws on original qualitative research to argue that the delivery of recent youth volunteering policies has uni...

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.

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.

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

Directory of Open Access Journals (Sweden)

Mistry Pramod K

2011-09-01

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

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...

Hispanic American Volunteering.

Science.gov (United States)

Lopez, Josue; Safrit, R. Dale

2001-01-01

Hispanic Americans in Cleveland, Ohio were interviewed about volunteerism. Six themes were identified: (1) influence of family and friends; (2) importance of volunteering to benefit youth; (3) importance of church and religious beliefs; (4) volunteering as a requirement; (5) connections between volunteerism and the community; and (6) personal…

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.

Occupational Disease Registries-Characteristics and Experiences.

Science.gov (United States)

Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

2017-06-01

Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

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...

Volunteering by older adults and risk of mortality: a meta-analysis.

Science.gov (United States)

Okun, Morris A; Yeung, Ellen WanHeung; Brown, Stephanie

2013-06-01

Organizational volunteering has been touted as an effective strategy for older adults to help themselves while helping others. Extending previous reviews, we carried out a meta-analysis of the relation between organizational volunteering by late-middle-aged and older adults (minimum age = 55 years old) and risk of mortality. We focused on unadjusted effect sizes (i.e., bivariate relations), adjusted effect sizes (i.e., controlling for other variables such as health), and interaction effect sizes (e.g., the joint effect of volunteering and religiosity). For unadjusted effect sizes, on average, volunteering reduced mortality risk by 47%, with a 95% confidence interval ranging from 38% to 55%. For adjusted effect sizes, on average, volunteering reduced mortality risk by 24%, with a 95% confidence interval ranging from 16% to 31%. For interaction effect sizes, we found preliminary support that as public religiosity increases, the inverse relation between volunteering and mortality risk becomes stronger. The discussion identifies several unresolved issues and directions for future research. PsycINFO Database Record (c) 2013 APA, all rights reserved.

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.

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

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.

Assessing Ontario's Personal Support Worker Registry

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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.

Methodical principles of assessment of financial compensation for clinical trial volunteer participants

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V. Ye. Dobrova

2013-10-01

Full Text Available Introduction. Due to the necessity to obtain the reliable results of a clinical trial and to distribute it to the general population of patients the problem of recruiting the adequate number of individuals to participate in the study as objects of observation in the group receiving the investigational medicinal product or as a member of the control group should to be solved. Aim of study. The aim of our study was to research and to justify practically the methodological approaches to determining financial compensation for participation of volunteers in the clinical trials and the appropriate methods of its calculation. Material and methods. For the purpose of determining the baseline factors for calculating the hourly compensation the survey of healthy volunteers and of expert professionals as well as the analysis of its results have been done. Questioning healthy volunteers regarding their attitudes towards inconvenience and discomfort during participation in clinical trials was held at the Ukrainian clinical research centers. Survey participants number was 99, they were healthy volunteers who took part in the first phase clinical trial or bioequivalence studies. The expert survey included questioning of the 193 professionals from Ukrainian clinical research centers, CRO, pharmaceutical manufacturers – research sponsors and collaborators State Expert Center Ministry of Health of Ukraine, who were involved in the planning, organization, implementation and evaluation of clinical trials as well as their regulatory control. Results of study. Using the method of pairwise comparisons and iterative refinement procedures the collective estimate of experts questionnaire results has been performed, by the results of which the nine indicators have been identified and the importance of each of them as units of discomfort have been established. Motivational factors of voluntary participation in clinical trials have been studied. Motivation system for

Integrated image data and medical record management for rare disease registries. A general framework and its instantiation to theGerman Calciphylaxis Registry.

Science.gov (United States)

Deserno, Thomas M; Haak, Daniel; Brandenburg, Vincent; Deserno, Verena; Classen, Christoph; Specht, Paula

2014-12-01

Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future.

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...

Differences in Investigator-Initiated Trials between Japan and Other Countries: Analyses of Clinical Trials Sponsored by Academia and Government in the ClinicalTrials.gov Registry and in the Three Japanese Registries.

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Tatsuya Ito

Full Text Available Following the amendment of the Pharmaceutical Affairs Law in Japan in 2003 researchers were permitted to begin investigator-initiated trials (IITs. In subsequent years, however, the number of IITs remained low. In other countries in Asia as well as in Europe, North America, and South Africa, the number of IITs has increased over the past decade. The differences in the characteristics of IITs between Japan and other countries are unknown. Some studies have analyzed the characteristics of all clinical trials according to registry databases, but there has been less research focusing on IITs.The purpose of this study is to analyze the characteristics of IITs in the ClinicalTrials.gov registry and in the three Japanese registries, to identify differences in IITs between Japan and other countries.Using Thomson Reuters Pharma™, trials sponsored by academia and government as IITs in 2010 and registered in ClinicalTrials.gov were identified. IITs from 2004 to 2012 in Japan were identified in the three Japanese registries: the University Hospital Medical Information Network Clinical Trials Registry, the Japan Pharmaceutical Information Center Clinical Trials Information, and the Japan Medical Association Center for Clinical Trials, Clinical Trials Registry. Characterization was made of the trial purposes, phases, participants, masking, arms, design, controls, and other data.New and revised IITs registered in ClinicalTrials.gov during 2010 averaged about 40% of all sponsor-identified trials. IITs were nearly all early-phase studies with small numbers of participants. A total of 56 Japanese IITs were found over a period of 8 years, and these were also almost nearly all early-phase studies with small numbers of participants.There appear to be no great differences between Japan and other countries in terms of characteristics of IITs. These results should prompt a new review of the IIT environment in Japan.

Registries Help Moms Measure Medication Risks

Science.gov (United States)

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

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...

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.

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

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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.

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…

Volunteering among older people in Korea.

Science.gov (United States)

Kim, Jibum; Kang, Jeong-Han; Lee, Min-Ah; Lee, Yongmo

2007-01-01

Faced with aging societies, there is an immense need to better understand the nature of volunteering outside advanced Western industrial countries. As a case of a rapidly aging society, we identify robust factors associated with elderly volunteering in Korea in terms of a resource framework. Data were derived from the Social Statistics Survey conducted by the Korea National Statistical Office in 1999 (N = 7,135) and 2003 (N = 8,371). We first determined overall and age-related volunteer rates for Korea compared to the United States. Using logistic regression, we then examined the effects of human, cultural, and social capital variables on volunteering. Approximately 6% of Koreans aged 65 years and older participate in volunteer programs. All human capital variables are positively related with volunteering. For cultural capital, those who identify their religion as Buddhism or Catholicism are more likely to volunteer than those who have no religion. But surprisingly, Protestantism does not consistently promote volunteering across both years. For social capital, older adults who live alone or with a spouse are more likely to volunteer than those living with both a spouse and children. In contrast to human capital, cultural and social capital on elderly volunteering appears to be contoured by social contexts.

The pancreatic surgery registry (StuDoQ|Pancreas) of the German Society for General and Visceral Surgery (DGAV) - presentation and systematic quality evaluation.

Science.gov (United States)

Wellner, Ulrich F; Klinger, Carsten; Lehmann, Kai; Buhr, Heinz; Neugebauer, Edmund; Keck, Tobias

2017-04-05

Pancreatic resections are among the most complex procedures in visceral surgery. While mortality has decreased substantially over the past decades, morbidity remains high. The volume-outcome correlation in pancreatic surgery is among the strongest in the field of surgery. The German Society for General and Visceral Surgery (DGAV) established a national registry for quality control, risk assessment and outcomes research in pancreatic surgery in Germany (DGAV SuDoQ|Pancreas). Here, we present the aims and scope of the DGAV StuDoQ|Pancreas Registry. A systematic assessment of registry quality is performed based on the recommendations of the German network for outcomes research (DNVF). The registry quality was assessed by consensus criteria of the DNVF in regard to the domains Systematics and Appropriateness, Standardization, Validity of the sampling procedure, Validity of data collection, Validity of statistical analysis and reports, and General demands for registry quality. In summary, DGAV StuDoQ|Pancreas meets most of the criteria of a high-quality clinical registry. The DGAV StuDoQ|Pancreas provides a valuable platform for quality assessment, outcomes research as well as randomized registry trials in pancreatic surgery.

ISHKS joint registry: A preliminary report.

Science.gov (United States)

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

2013-09-01

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

Call for volunteers

CERN Document Server

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 ...

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.

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.

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…

Analysis of Volunteer Soldiers‘ Attitudes to Service in the Lithuanian Military

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Vileikienė Eglė

2015-12-01

Full Text Available The article presents an analysis of volunteer soldiers as a link between the Lithuanian military and society, their attitudes towards military service and their motivation to serve in the Lithuanian army. The authors looked at soldiers’ dedication to defend their Homeland and motives for serving in the Lithuanian army, presenting an assessment of the situation in the ranks and their overall satisfaction with military service. Volunteer soldiers’ expectations are also discussed, as well as their motives to remain in service, plus there are also recommendations for attracting new soldier recruits. The article concludes with the statement that Lithuanian volunteer soldiers are an important unifying link between the Lithuanian army and society, and can significantly contribute to the formation of the image of the soldier’s profession in society. Besides the social status that comes with military service and the satisfaction of financial needs, volunteer soldiers are exclusively characterised by strong patriotic feelings which determine their motivation to serve and defend their Homeland. The article’s findings rest on data from the complex sociological research study “Motivation to serve in the Ministry of Defence Volunteer Forces of the Lithuanian Military” which was conducted in April–November, 2014 by the Strategic Research Centre at the Institute of Military Science of the General Jonas Žemaitis Military Academy of Lithuania.

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.

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…

Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry

Science.gov (United States)

Daniels, Amy M.; Rosenberg, Rebecca E.; Anderson, Connie; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

2012-01-01

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's…

Beliefs about volunteerism, volunteering intention, volunteering behavior, and purpose in life among Chinese adolescents in Hong Kong.

Science.gov (United States)

Law, Ben M F; Shek, Daniel T L

2009-09-01

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 volunteering behavior. Purpose in life was associated more strongly with prosocial value function than with other types of beliefs (except understanding function). When different beliefs are grouped, the correlation between purpose in life and other-serving beliefs was higher than that between purpose in life and self-serving beliefs. Purpose in life was also associated with volunteering intention and behavior. Path analyses showed that purpose in life predicted volunteering behavior via beliefs and intention. While other-serving beliefs predicted volunteering behavior directly, self-serving beliefs did not have such direct effect.

Beliefs about Volunteerism, Volunteering Intention, Volunteering Behavior, and Purpose in Life among Chinese Adolescents in Hong Kong

Directory of Open Access Journals (Sweden)

Ben M. F. Law

2009-01-01

Full Text Available 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 volunteering behavior. Purpose in life was associated more strongly with prosocial value function than with other types of beliefs (except understanding function. When different beliefs are grouped, the correlation between purpose in life and other-serving beliefs was higher than that between purpose in life and self-serving beliefs. Purpose in life was also associated with volunteering intention and behavior. Path analyses showed that purpose in life predicted volunteering behavior via beliefs and intention. While other-serving beliefs predicted volunteering behavior directly, self-serving beliefs did not have such direct effect.

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.

Parallel Volunteer Learning during Youth Programs

Science.gov (United States)

Lesmeister, Marilyn K.; Green, Jeremy; Derby, Amy; Bothum, Candi

2012-01-01

Lack of time is a hindrance for volunteers to participate in educational opportunities, yet volunteer success in an organization is tied to the orientation and education they receive. Meeting diverse educational needs of volunteers can be a challenge for program managers. Scheduling a Volunteer Learning Track for chaperones that is parallel to a…

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.

Towards a national trauma registry for the United Arab Emirates

Directory of Open Access Journals (Sweden)

Barka Ezedin

2010-07-01

Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

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

Recruitment, Training, and Retention of Volunteers in Youth-Serving Organizations: A Review of the Literature. Working Paper.

Science.gov (United States)

Sitrin, Barbara

Noting a paucity of research on volunteerism, this report examines research on volunteer recruitment, training, and retention, particularly in youth-serving organizations that rely on volunteers to accomplish their missions. The report also proposes questions for further research. The report notes that while the number of individuals volunteering…

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.

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. ...

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.

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

International Nuclear Information System (INIS)

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

2013-01-01

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 (TiO 2 ) 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.

Volunteering as Students significant social activities

Directory of Open Access Journals (Sweden)

I. A. Zaitseva

2016-01-01

Full Text Available The article examines the involvement of students in volunteer activities, examines the organization of students volunteer activities and volunteer projects realization at the university. The potential of volunteerism as an effective mechanism for addressing the urgent social problems is revealed.Theauthorstudiesexperience of volunteer services organization the I.A. Bunin State University in Yelets.

The utility of linked cancer registry and health administration data for describing system-wide outcomes and research: a BreastScreen example.

Science.gov (United States)

Buckley, Elizabeth S; Sullivan, Tom; Farshid, Gelareh; Hiller, Janet E; Roder, David M

2016-10-01

Stratification of women with screen-detected ductal carcinoma in situ (DCIS) by risk of subsequent invasive breast cancer (IBC) could assist treatment planning and selection of surveillance protocols that accord with risk. We assessed the utility of routinely collected administrative data for stratifying by IBC risk following DCIS detection in a population-based screening programme to inform ongoing surveillance protocols. A retrospective cohort design was used, employing linked data from the South Australian breast screening programme and cancer registry. Women entered the study at screening commencement and were followed until IBC diagnosis, death or end of the study period (1 December 2010), whichever came first. Routinely collected administrative data were analyzed to identify predictors of invasive breast cancer. Proportional hazards regression confirmed that the DCIS cohort had an elevated risk of IBC after adjustment for relevant confounders (HR = 4.0 (95% CL 3.4, 4.8)), which accorded with previous study results. Within the DCIS cohort, conservative breast surgery and earlier year of screening commencement were both predictive of an elevated invasive breast cancer risk. These linked cancer registry and administrative data gave plausible estimates of IBC risk following DCIS diagnosis, but were limited in coverage of key items for further risk stratification. It is important that the research utility of administrative datasets is maximized in their design phase in collaboration with researchers. © 2016 John Wiley & Sons, Ltd.

Recent Developments and Future Trends in Volunteered Geographic Information Research: The Case of OpenStreetMap

Directory of Open Access Journals (Sweden)

Pascal Neis

2014-01-01

Full Text Available User-generated content (UGC platforms on the Internet have experienced a steep increase in data contributions in recent years. The ubiquitous usage of location-enabled devices, such as smartphones, allows contributors to share their geographic information on a number of selected online portals. The collected information is oftentimes referred to as volunteered geographic information (VGI. One of the most utilized, analyzed and cited VGI-platforms, with an increasing popularity over the past few years, is OpenStreetMap (OSM, whose main goal it is to create a freely available geographic database of the world. This paper presents a comprehensive overview of the latest developments in VGI research, focusing on its collaboratively collected geodata and corresponding contributor patterns. Additionally, trends in the realm of OSM research are discussed, highlighting which aspects need to be investigated more closely in the near future.

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

The European Registry for Patients with Mechanical Circulatory Support (EUROMACS)

DEFF Research Database (Denmark)

de By, Theo M M H; Mohacsi, Paul; Gummert, Jan

2015-01-01

other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry...

The EMBARC European bronchiectasis registry: Protocol for an international observational study

NARCIS (Netherlands)

Chalmers, J.D. (James D.); S. Aliberti (Stefano); Polverino, E. (Eva); Vendrell, M. (Montserrat); Crichton, M. (Megan); Loebinger, M. (Michael); Dimakou, K. (Katerina); Clifton, I. (Ian); M. van der Eerden (Menno); G. Rohde (Gernot); Murris-Espin, M. (Marlene); Masefield, S. (Sarah); Gerada, E. (Eleanor); Shteinberg, M. (Michal); F.C. Ringshausen (Felix C.); Haworth, C. (Charles); W.G. Boersma (Wim); Rademacher, J. (Jessica); Hill, A.T. (Adam T.); Aksamit, T. (Timothy); O’Donnell, A. (Anne); Morgan, L. (Lucy); B. Milenkovic (Branislava); Tramma, L. (Leandro); Neves, J. (Joao); Menendez, R. (Rosario); Paggiaro, P. (Perluigi); Botnaru, V. (Victor); Skrgat, S. (Sabina); R. Wilson (Richard); Goeminne, P. (Pieter); De Soyza, A. (Anthony); T. Welte; Torres, A. (Antoni); S. Elborn (Stuart); Blasi, F. (Francesco)

2016-01-01

textabstractBronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) registry is a prospective,

[Drug registries: post-marketing evaluation of the benefit-risk profile and promotion of appropriateness. The regional point of view].

Science.gov (United States)

Martelli, Luisa; Venegoni, Mauro

2013-06-01

Italian Regions and the Italian regulatory agency share a common interest in promoting the appropriateness of drug use, containing drug expenditure and acquiring additional evidence on the effectiveness and safety of drugs. Drug registries can help attaining these objectives. Specifically, the registries implemented in Italy were able to cover the first two objectives, whereas some critical issues were raised on the third one. For instance, the data recorded in the registries are not available at regional level to conduct safety and effectiveness investigations. This is a paradox, when considering that drugs included in the registries have a risk-benefit profile that is only partially defined at the moment of marketing. Currently, researchers and regions can conduct epidemiological research (cohort and case control studies), on the basis of record-linkage procedures, on all drugs prescribed in general practice (which are older drugs with a better defined risk-benefit profile). The expected outcomes of registries should be more clearly defined: when the main aim is to promote appropriateness, the recording of only a very limited amount of data should be required (to avoid a bureaucratic burden on clinicians).The Italian centers of the ENCePP network might play an important role in planning and conducting drug registries: through the presence in the steering committees of the registries, and in conducting epidemiological studies that make the most of this powerful instrument.

Adoption of the Hash algorithm in a conceptual model for the civil registry of Ecuador

Science.gov (United States)

Toapanta, Moisés; Mafla, Enrique; Orizaga, Antonio

2018-04-01

The Hash security algorithm was analyzed in order to mitigate information security in a distributed architecture. The objective of this research is to develop a prototype for the Adoption of the algorithm Hash in a conceptual model for the Civil Registry of Ecuador. The deductive method was used in order to analyze the published articles that have a direct relation with the research project "Algorithms and Security Protocols for the Civil Registry of Ecuador" and articles related to the Hash security algorithm. It resulted from this research: That the SHA-1 security algorithm is appropriate for use in Ecuador's civil registry; we adopted the SHA-1 algorithm used in the flowchart technique and finally we obtained the adoption of the hash algorithm in a conceptual model. It is concluded that from the comparison of the DM5 and SHA-1 algorithm, it is suggested that in the case of an implementation, the SHA-1 algorithm is taken due to the amount of information and data available from the Civil Registry of Ecuador; It is determined that the SHA-1 algorithm that was defined using the flowchart technique can be modified according to the requirements of each institution; the model for adopting the hash algorithm in a conceptual model is a prototype that can be modified according to all the actors that make up each organization.

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.

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

2018-05-01

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

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.

Intergenerational effects of endocrine-disrupting compounds: a review of the Michigan polybrominated biphenyl registry.

Science.gov (United States)

Curtis, Sarah W; Conneely, Karen N; Marder, Mary E; Terrell, Metrecia L; Marcus, Michele; Smith, Alicia K

2018-06-11

Endocrine-disrupting compounds (EDCs) are a broad class of chemicals present in many residential products that can disrupt hormone signaling and cause health problems in humans. Multigenerational cohorts, like the Michigan polybrominated biphenyl registry, are ideal for studying the effects of intergenerational exposure. Registry participants report hormone-related health problems, particularly in those exposed before puberty or those in the second generation exposed through placental transfer or breastfeeding. However, more research is needed to determine how EDCs cause health problems and the mechanisms underlying intergenerational exposure. Utilizing existing data in this registry, along with genetic and epigenetic approaches, could provide insight to how EDCs cause human disease and help to determine the risk to exposed populations and future generations.

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

Science.gov (United States)

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

2017-07-01

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

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....

Becoming an Older Volunteer: A Grounded Theory Study

Science.gov (United States)

Witucki Brown, Janet; Chen, Shu-li; Mefford, Linda; Brown, Allie; Callen, Bonnie; McArthur, Polly

2011-01-01

This Grounded Theory study describes the process by which older persons “become” volunteers. Forty interviews of older persons who volunteered for Habitat for Humanity were subjected to secondary content analysis to uncover the process of “becoming” a volunteer. “Helping out” (core category) for older volunteers occurs within the context of “continuity”, “commitment” and “connection” which provide motivation for volunteering. When a need arises, older volunteers “help out” physically and financially as health and resources permit. Benefits described as “blessings” of volunteering become motivators for future volunteering. Findings suggest that older volunteering is a developmental process and learned behavior which should be fostered in older persons by personally inviting them to volunteer. Intergenerational volunteering projects will allow older persons to pass on knowledge and skills and provide positive role modeling for younger volunteers. PMID:21994824

Becoming an Older Volunteer: A Grounded Theory Study

Directory of Open Access Journals (Sweden)

Janet Witucki Brown

2011-01-01

Full Text Available This Grounded Theory study describes the process by which older persons “become” volunteers. Forty interviews of older persons who volunteered for Habitat for Humanity were subjected to secondary content analysis to uncover the process of “becoming” a volunteer. “Helping out” (core category for older volunteers occurs within the context of “continuity”, “commitment” and “connection” which provide motivation for volunteering. When a need arises, older volunteers “help out” physically and financially as health and resources permit. Benefits described as “blessings” of volunteering become motivators for future volunteering. Findings suggest that older volunteering is a developmental process and learned behavior which should be fostered in older persons by personally inviting them to volunteer. Intergenerational volunteering projects will allow older persons to pass on knowledge and skills and provide positive role modeling for younger volunteers.

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

2014-10-01

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 activity of older adults. This study was conducted with volunteers from Experience Corps® (EC), a national program that brings older adults into schools to work with students. Data were derived from a baseline survey of older adults who were new EC volunteers in fall of 2006 and 2007. Follow-up interviews were conducted with 338 volunteers in fall 2010 to capture work, education, and community activities undertaken subsequent to joining EC. Subsequent to joining EC, 16% of volunteers reported that they started a new job, 53% started another volunteer position, 40% started a community activity, and 39% took a class/started educational program. When asked if and how EC participation played a role in their new involvements, 71% said it increased confidence, 76% said it increased realization of the importance of organized activities/daily structure, and more than 40% said they made social connections that led to new involvements. Most reported they were more likely to be involved in advocacy efforts for public education. Volunteering among older adults is a means as well as an end--just as it is for young people. Programs can do more to attract and serve older adults by promoting volunteering as a pathway to other engagements, including work, social, and civic activities. © 2014 Society for Public Health Education.

Are you sitting comfortably? Perspectives of the researchers and the researched on "being comfortable".

Science.gov (United States)

Morris, Norma; Balmer, Brian

2006-01-01

In a study of volunteers in medical research, we found contrasting readings of "being comfortable" by the volunteer research subjects and the researchers. Although the experimental process (testing a new kind of diagnostic technology) involved some physical discomfort--and the researchers focused on this--the volunteers' concerns centred on feeling socially comfortable and managing feelings of embarrassment or isolation, and they generally made light of the physical aspects. The bias of volunteer concerns, which is understandable in terms of the different situations of researchers and volunteers and the different tensions they create, has potential implications for the engagement of researchers with their research subjects and prevailing standards for the ethical and accountable conduct of research.

Department of Defense Birth and Infant Health Registry: select reproductive health outcomes, 2003-2014.

Science.gov (United States)

Bukowinski, Anna T; Conlin, Ava Marie S; Gumbs, Gia R; Khodr, Zeina G; Chang, Richard N; Faix, Dennis J

2017-11-01

Established following a 1998 directive, the Department of Defense Birth and Infant Health Registry (Registry) team conducts surveillance of select reproductive health outcomes among military families. Data are compiled from the Military Health System Data Repository and Defense Manpower Data Center to define the Registry cohort and outcomes of interest. Outcomes are defined using ICD-9/ICD-10 and Current Procedural Terminology codes, and include: pregnancy outcomes (e.g., live births, losses), birth defects, preterm births, and male:female infant sex ratio. This report includes data from 2003-2014 on 1,304,406 infants among military families and 258,332 pregnancies among active duty women. Rates of common adverse infant and pregnancy outcomes were comparable to or lower than those in the general US population. These observations, along with prior Registry analyses, provide reassurance that military service is not independently associated with increased risks for select adverse reproductive health outcomes. The Registry's diverse research portfolio demonstrates its unique capabilities to answer a wide range of questions related to reproductive health. These data provide the military community with information to identify successes and areas for improvement in prevention and care.

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.

Medication use in juvenile uveitis patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry.

Science.gov (United States)

Henderson, Lauren A; Zurakowski, David; Angeles-Han, Sheila T; Lasky, Andrew; Rabinovich, C Egla; Lo, Mindy S

2016-02-16

There is not yet a commonly accepted, standardized approach in the treatment of juvenile idiopathic uveitis when initial steroid therapy is insufficient. We sought to assess current practice patterns within a large cohort of children with juvenile uveitis. This is a cross-sectional cohort study of patients with uveitis enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRAnet) registry. Clinical information including, demographic information, presenting features, disease complications, and medications were collected. Chi-square and Fisher's exact tests were used to assess for associations between medications and clinical characteristics. Ninety-two children with idiopathic and 656 with juvenile idiopathic arthritis (JIA)-associated uveitis were identified. Indication (arthritis or uveitis) for medication use was not available for JIA patients; therefore, detailed analysis was limited to children with idiopathic uveitis. In this group, 94 % had received systemic steroids. Methotrexate (MTX) was used in 76 % of patients, with oral and subcutaneous forms given at similar rates. In multivariable analysis, non-Caucasians were more likely to be treated initially with subcutaneous MTX (P = 0.003). Of the 53 % of patients treated with a biologic DMARD, all received a tumor necrosis factor (TNF) inhibitor. TNF inhibitor use was associated with a higher frequency of cataracts (52 % vs 21 %; P = 0.001) and antinuclear antibody positivity (49 % vs 29 %; P = 0.04), although overall complication rates were not higher in these patients. Among idiopathic uveitis patients enrolled in the CARRAnet registry, MTX was the most commonly used DMARD, with subcutaneous and oral forms equally favored. Patients who received a TNF inhibitor were more likely to be ANA positive and have cataracts.

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM). Peri-operative data and Patient Reported Outcome Measures (PROM......-5 D demonstrated improvement after 1 and 2 years from 0.66 pre-op to 0.78 at 2 years. HSAS improved significantly from 2.5 to 3.3. Pain score data demonstrated improvement in NRS-rest 39 to 17 and NRS Walk 49 to 22 at follow-up. We conclude that patients with FAI undergoing hip arthroscopy...

Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.

Science.gov (United States)

Bellgard, Matthew I; Walker, Caroline E; Napier, Kathryn R; Lamont, Leanne; Hunter, Adam A; Render, Lee; Radochonski, Maciej; Pang, Jing; Pedrotti, Annette; Sullivan, David R; Kostner, Karam; Bishop, Warrick; George, Peter M; O'Brien, Richard C; Clifton, Peter M; Bockxmeer, Frank M Van; Nicholls, Stephen J; Hamilton-Craig, Ian; Dawkins, Hugh Js; Watts, Gerald F

2017-10-01

Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often under-treated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, web-based Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.

Self-fulfillment despite barriers: volunteer work of people living with HIV.

Science.gov (United States)

Samson, André; Lavigne, René M; MacPherson, Paul

2009-11-01

With the decline in the morbidity and mortality associated with HIV infection, the majority of people living with HIV (PWHIV) experience a higher quality of life and longer life expectancy. Since this diagnosis no longer prevents an active lifestyle, many PWHIV are re-integrating into the workplace or are contemplating this possibility. Despite the multiple advantages associated with a return to work, research has identified barriers related to work and HIV infection. These barriers could prevent an important minority of PWHIV who wish to return to work from re-integrating into this environment. In this context, volunteering could be an alternate way to regain an active lifestyle. This research found that volunteer work allowed participants to enrich their social lives, to regain a sense of psychological well-being, and to apply their abilities to the benefit of others. However, participants are restricted by their preference to volunteer for HIV-related organizations in order to avoid social stigma and rejection.

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

Science.gov (United States)

Jessica Call; Jennifer Hayes

2007-01-01

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

Self-perceived role and function of Christian prison chaplains and Buddhist volunteers in Hong Kong prisons.

Science.gov (United States)

Chui, Wing Hong; Cheng, Kevin Kwok-yin

2013-02-01

Although there have been a handful of studies examining the work of chaplains and prison volunteers in a Western setting, few have endeavored to conduct research into the experiences of religious workers in Asian penitentiaries. To fill this gap, this article reports on exploratory research examining the work of a selected group of religious workers in Hong Kong prisons. A total of 17 religious workers were interviewed: 10 prison chaplains and 7 Buddhist volunteers who paid regular prison visits. Qualitative findings generated from in-depth interviews present three themes: the range of religious activities performed, the importance of religion for the rehabilitation of inmates, and the hope of continued religious support to prisoners after discharge. The significance of this research is that it sheds light on the understudied work of prison chaplains and volunteers in Hong Kong and portrays the difference between the works of the Christian ministry and Buddhist volunteers.

Medical Dosimetric Registry of Russian Atomic Industry Employees: Current Status and Perspectives

International Nuclear Information System (INIS)

Ilyin, L. A.; Kiselev, M. F.; Panfilov, A. P.; Kochetkov, O. A.; Ivanov, A. A.; Grinev, M. P.; Soloviev, V. Y.; Semenov, V. G.; Tukov, A. R.; Koshuurnikova, N. A.; Takhauov, R. M.; Melnikov, G. Y.

2004-01-01

Epidemiological studies of nuclear industry personnel contain the significant abilities to assess the prolonged radiation exposure effects in the human health. The clarification of these assessments and following improvements of the scientific justification of radiation regulation require the expansion of factual basis of the research currently, Branch Medical Dosimetric Registry (BMDR) of atomic industry and nuclear power employees is under the development in Russian to compose a number of regional registries. This work is coordinated by the State Research Center- Institute of Biophysics (Moscow). The first phase of this project was devoted to the forming of the regional registry of Mayak PA employees (Ozersk, South Uranl region). the employee registries of Siberian Chemical Plant (SCP, Seversk, Tomsk region) and Mountain Chemical Plant (MCP, Zheleznogorsk, Krasnoyarsk region) are at the finalization. At later phases, BMDR will be added by the information on other enterprises and on operating NPP too. The paper describes the structure, general issues of the forming and current status of BMDR. The comparison of major BMDR features versus LSS registry (which is the one of basic components for international radiation protection recommendations and current radiation protection standards) demonstrates that BMDR information can be more preferable to assess the significance of the man made radiation at high and intermediate dose ranges. Particularly, the number of employees (20-40 year age range) exposed to doses specific to detectable radiation health effects (above 2000 mSv) is almost ten times more than that for LSS cohort. Besides, the health monitoring was elaborated since the employment start point (Whereas, since year 5 for LSS cohort). BMDR dose records were measured (against LSS reconstructed doses) and the employee exposure duration was equal to years and decade (alternatively to momentary exposure recorded in LSS). BMDR data quantity and quality correspond to

What motivates people to volunteer? the case of volunteer AIDS caregivers in faith-based organizations in KwaZulu-Natal, South Africa.

Science.gov (United States)

Akintola, Olagoke

2011-01-01

Volunteers are increasingly being relied upon to provide home-based care for people living with AIDS in South Africa and this presents several unique challenges specific to the HIV/AIDS context in Africa. Yet it is not clear what motivates people to volunteer as home-based caregivers. Drawing on the functional theory on volunteer motivations, this study uses data from qualitative interviews with 57 volunteer caregivers of people living with HIV/AIDS in six semi-rural South African communities to explore volunteer motivations. Findings revealed complex motivations underlying volunteering in AIDS care. Consistent with functional theorizing, most of the volunteers reported having more than one motive for enrolling as volunteers. Of the 11 categories of motivations identified, those relating to altruistic concerns for others and community, employment or career benefits and a desire by the unemployed to avoid idleness were the most frequently mentioned. Volunteers also saw volunteering as an opportunity to learn caring skills or to put their own skills to good use, for personal growth and to attract good things to themselves. A few of the volunteers were heeding a religious call, hoping to gain community recognition, dealing with a devastating experience of AIDS in the family or motivated for social reasons. Care organizations' poor understanding of volunteer motives, a mismatch between organizational goals and volunteer motivations, and inadequate funding meant that volunteers' most pressing motives were not satisfied. This led to discontentment, resentment and attrition among volunteers. The findings have implications for home-based care policies and programmes, suggesting the need to rethink current models using non-stipended volunteers in informal AIDS care. Information about volunteer motivations could help organizations plan recruitment messages, recruit volunteers whose motives match organizational goals and plan how to assist volunteers to satisfy these motives

Agency for Toxic Substances and Disease Registry

Science.gov (United States)

... Z # Search Form Controls Search The CDC submit Agency for Toxic Substances and Disease Registry Note: Javascript ... gov . Recommend on Facebook Tweet Share Compartir The Agency for Toxic Substances and Disease Registry (ATSDR) , based ...

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

Perceptions of short-term medical volunteer work: a qualitative study in Guatemala.

Science.gov (United States)

Green, Tyler; Green, Heidi; Scandlyn, Jean; Kestler, Andrew

2009-02-26

Each year medical providers from wealthy countries participate in short-term medical volunteer work in resource-poor countries. Various authors have raised concern that such work has the potential to be harmful to recipient communities; however, the social science and medical literature contains little research into the perceptions of short-term medical volunteer work from the perspective of members of recipient communities. This exploratory study examines the perception of short-term medical volunteer work in Guatemala among groups of actors affected by or participating in these programs. The researchers conducted in-depth, semi-structured interviews with 72 individuals, including Guatemalan healthcare providers and health authorities, foreign medical providers, non-medical personnel working on health projects, and Guatemalan parents of children treated by a short-term volunteer group. Detailed notes and summaries of these interviews were uploaded, coded and annotated using Atlas.ti (Scientific Software Development GmbH, Berlin) to identify recurrent themes from the interviews. Informants commonly identified a need for increased access to medical services in Guatemala, and many believed that short-term medical volunteers are in a position to offer improved access to medical care in the communities where they serve. Informants most frequently cited appropriate patient selection and attention to payment systems as the best means to avoid creating dependence on foreign aid. The most frequent suggestion to improve short-term medical volunteer work was coordination with and respect for local Guatemalan healthcare providers and their communities, as insufficient understanding of the country's existing healthcare resources and needs may result in perceived harm to the recipient community. The perceived impact of short-term medical volunteer projects in Guatemala is highly variable and dependent upon the individual project. In this exploratory study, project

"Why am i a volunteer?": building a quantitative scale

Directory of Open Access Journals (Sweden)

Carlos Eduardo Cavalcante

Full Text Available This paper aims to analyze the validity of a quantitative instrument to identify what attracts someone to volunteer work, as well as what makes them stay and what makes them quit such an activity. The theoretical framework lists aspects related to volunteer work, which is followed by a discussion on models of analysis of volunteer motivation. As to the objectives, this research is descriptive, since it presents the analysis of the validity of a quantitative instrument that seeks to understand and describe the reasons for volunteering at the Pastoral da Criança, a Brazilian NGO. This instrument is based on theoretical ideas by Souza, Medeiros and Fernandes (2006. Reliability - Cronbach's Alpha - reached values between 0.7 and 0.8. Regarding Kaiser-Meyer-Olkin measure of sampling adequacy a good index was also obtained: 0.74. Despite the good results of reliability and sampling adequacy of factor analysis, none of the variables resulted in the expected combination, namely: indicators versus profile. It is necessary to improve the semantic meaning of certain factors, or even increase the number of indicators so as to generate additional correlations among them.

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.

Organizational support and volunteering benefits for older adults.

Science.gov (United States)

Tang, Fengyan; Choi, Eunhee; Morrow-Howell, Nancy

2010-10-01

This study tested a theoretical model of volunteering benefits and examined the mechanism through which volunteering benefits older adults. This is a 2-wave study of 253 older adult volunteers serving in 10 volunteer programs. Older volunteers completed the mailed surveys in 2005 and 2006. Structural equation modeling was used to define the latent variables and to test direct and indirect relationships among organizational support, socioemotional benefits, and self-reported health. Organizational support (measured by choice of volunteer activity, training, and ongoing support) had significant direct associations with 2 latent factors of socioemotional benefits, that is, perceived contribution and personal benefits. Perceived contribution was significantly related to mental health. Additionally, older volunteers with lower socioeconomic status (SES) committed more hours and perceived more personal benefits than higher SES peers. These findings suggest that volunteer programs can provide various organizational supports to older volunteers, especially to low-SES volunteers, in order to promote the socioemotional and health benefits of volunteering to older adults. Psychological well-being of older adults can be improved through engagement in meaningful volunteer activities and contribution to others.

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.

Training and supporting hospice volunteers: a regional survey.

Science.gov (United States)

Lavenburg, Philip; Bernt, Frank M

2012-08-01

We surveyed volunteers from 8 hospices in the Delaware Valley regarding training, perceived needs, and role satisfaction. Results were consistent with previous studies: satisfaction with preservice training and with volunteering was very high; respondents reported feeling very prepared and confident about doing hospice work as a result of their volunteer training. In addition, longer volunteer preservice training was associated with higher levels of overall satisfaction with training; levels of volunteer satisfaction and fulfillment tended to be lower during the first year of volunteering; and participation in volunteer support teams was associated with finding volunteer work rewarding and with feeling a part of the hospice team. Implications for preservice training and ongoing support and education of hospice volunteers are discussed.

Why does primary angioplasty not work in registries? Quantifying the susceptibility of real-world comparative effectiveness data to allocation bias.

Science.gov (United States)

Sen, Sayan; Davies, Justin E; Malik, Iqbal S; Foale, Rodney A; Mikhail, Ghada W; Hadjiloizou, Nearchos; Hughes, Alun; Mayet, Jamil; Francis, Darrel P

2012-11-01

Meta-analysis of registries (comparative effectiveness research) shows that primary angioplasty and fibrinolysis have equivalent real-world survival. Yet, randomized, controlled trials consistently find primary angioplasty superior. Can unequal allocation of higher-risk patients in registries have masked primary angioplasty benefit? First, we constructed a model to demonstrate the potential effect of allocation bias. We then analyzed published registries (55022 patients) for allocation of higher-risk patients (Killip class ≥1) to determine whether the choice of reperfusion therapy was affected by the risk level of the patient. Meta-regression was used to examine the relationship between differences in allocation of high-risk patient to primary angioplasty or fibrinolysis and mortality. Initial modeling suggested that registry outcomes are sensitive to allocation bias of high-risk patients. Across the registries, the therapy receiving excess high-risk patients had worse mortality. Unequal distribution of high-risk status accounted for most of the between-registry variance (adjusted R(2)(meta)=83.1%). Accounting for differential allocation of higher-risk patients, primary angioplasty gave 22% lower mortality (odds ratio, 0.78; 95% confidence interval, 0.64-0.97; P=0.029). We derive a formula, called the number needed to abolish, highlighting situations in which comparative effectiveness studies are particularly vulnerable to this bias. In ST-segment elevation myocardial infarction, clinicians' preference for management of a few high-risk patients can shift mortality substantially. Comparative effectiveness research in any disease is vulnerable to this, especially diseases with an immediately identifiable high-risk subgroup that clinicians prefer to allocate to 1 therapy. For this reason, preliminary indications from registry-based comparative effectiveness research should be definitively tested by randomized, controlled trials.

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

OpenAIRE

Casamento, K.; Laverty, A.; Wilsher, M.; Twiss, J.; Gabbay, E.; Glaspole, I.; Jaffe, A.

2016-01-01

Background We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. Methods A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were s...

Who will volunteer? Analysing individual and structural factors of volunteering in Swiss sports clubs.

Science.gov (United States)

Schlesinger, Torsten; Nagel, Siegfried

2013-01-01

This article analyses the conditions influencing volunteering in sports clubs. It focuses not only on individual characteristics of volunteers but also on the corresponding structural conditions of sports clubs. It proposes a model of voluntary work in sports clubs based on economic behaviour theory. The influences of both the individual and context levels on the decision to engage in voluntary work are estimated in different multilevel models. Results of these multilevel analyses indicate that volunteering is not just an outcome of individual characteristics such as lower workloads, higher income, children belonging to the sports club, longer club memberships, or a strong commitment to the club. It is also influenced by club-specific structural conditions; volunteering is more probable in rural sports clubs whereas growth-oriented goals in clubs have a destabilising effect.

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.

Designing exposure registries for improved tracking of occupational exposure and disease.

Science.gov (United States)

Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

2016-06-27

Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

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

Integration of data: the Nanomaterial Registry project and data curation

International Nuclear Information System (INIS)

Guzan, K A; Mills, K C; Gupta, V; Murry, D; Ostraat, M L; Scheier, C N; Willis, D A

2013-01-01

Due to the use of nanomaterials in multiple fields of applied science and technology, there is a need for accelerated understanding of any potential implications of using these unique and promising materials. There is a multitude of research data that, if integrated, can be leveraged to drive toward a better understanding. Integration can be achieved by applying nanoinformatics concepts. The Nanomaterial Registry is using applied minimal information about nanomaterials to support a robust data curation process in order to promote integration across a diverse data set. This paper describes the evolution of the curation methodology used in the Nanomaterial Registry project as well as the current procedure that is used. Some of the lessons learned about curation of nanomaterial data are also discussed. (paper)

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)

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.

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.

Predicting volunteer commitment in environmental stewardship programmes

Science.gov (United States)

Robert L. Ryan; Rachel Kaplan; Robert E. Grese

2001-01-01

The natural environment benefits greatly from the work of volunteers in environmental stewardship programmes. However, little is known about volunteers' motivations for continued participation in these programmes. This study looked at the relationship between volunteer commitment and motivation, as well as the effect that volunteering has on participants'...

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

Science.gov (United States)

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

2016-01-01

The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

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.

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

2018-05-21

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.

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…

Can micro-volunteering help in Africa?

CSIR Research Space (South Africa)

Butgereit, L

2013-05-01

Full Text Available is convenient to the micro-volunteer, and in small pieces of time (bitesized). This paper looks at a micro-volunteering project where participants can volunteer for five to ten minutes at a time using a smart phone and assist pupils with their mathematics....

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.

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

Science.gov (United States)

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

2018-02-01

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

Ethical issues in recruitment of "healthy volunteers": study of a clinical research organisation in Hyderabad.

Science.gov (United States)

Krishna, Shilpa; Prasad, N Purendra

2014-01-01

This paper raises some of the ethical issues involved in the recruitment of healthy volunteers (HVs) by clinical research organizations (CROs) for bioavailability and bioequivalent (BA/BE) studies. It also explores the underlying reasons for the participation of the HVs and their interaction with the CROs. The findings are based on the data collected from 50 HVs participating in a BA/BE study conducted by a CRO in Hyderabad and from the key officials involved in it. The findings indicate the existence of various complex networks, throw some light on the role of middlemen ("Anna") and the negotiation process, and give us an insight into the social norms and values that compelled the HVs to participate in the study. The paper offers a critical analysis of a few ethical concerns.

Antecedents of perceived graduate employability: A study of student volunteers in a community-based organisation

Directory of Open Access Journals (Sweden)

Suki Goodman

2016-05-01

Research purpose: This study aimed at investigating motivations to volunteer, perceived graduate competencies, extent of participating in volunteering, along with gender and faculty of registration, as antecedents of perceived graduate employability among student volunteers and to compare the relative contributions of these antecedences in predicting perceived employability. Research approach, design and method: A cross-sectional research design and a quantitative data collection method were used. The relative weights analysis was conducted to answer the research question. Main findings: Overall, the results demonstrated, firstly, that different sets of predictors statistically significantly predict Perceived External Employability and Perceived Internal Employability, respectively. In the case of Perceived External Employability, a biographical predictor (faculty of registration is the strongest predictor, whereas in the case of Internal Employability, a questionnaire measurement (of Social Motivation comes out on top. Practical implications/managerial implications: The social motivation factor as a predictor of perceived internal employability suggests that the more students valued the social interactions brought about by their volunteering activities, the better they saw themselves equipped for employment. This gives some weight to the argument that engaging in volunteer activities can help equip students with competencies that make them more prepared for the world of work. Contribution/value-add: The study provided support for the construct validity of the scale for the measurement of perceived employability and evidence that different sets of predictors contribute to perceived internal and external employability.

Main components and content of sports volunteer activities

Directory of Open Access Journals (Sweden)

Iryna Petrenkо

2017-12-01

Full Text Available Purpose: identification of the main structural components and content of sports volunteer activities. Material & Methods: used analysis of literature and documents, organizational analysis. Result: basic structural components of sports volunteer activity are defined. The content of sports volunteer activity is disclosed. Conclusion: sports volunteer activity includes the following structural components: subject, object, purpose, motivation, means, actions; subject is a sports volunteer, the object is a sports competition, the goal is to provide gratuitous assistance for a quality competition, the means are the special knowledge, skills, communication abilities of sports volunteers, actions should be understood as types of volunteer activities and functions that volunteers perform during the preparation and conduct of competitions. Main types of sports volunteer activity are: 1 organizational; 2 judiciary; 3 coaching; 4 legal; 5 medical. Functions that volunteers perform in the competition system are general and special. Content of the functions of sports volunteering depends on the specifics of the sports, the rank of the competition, the specifics of the competition for people with special needs.

Manual for a Volunteer Services System.

Science.gov (United States)

Helgerson, Linda; And Others

This manual presents guidelines for planning, monitoring, and controlling the development and operation of volunteer assistance programs. The materials included address questions related to both the process of establishing a volunteer program and the administration of a volunteer management system. The manual is not intended to provide a blueprint…

Understanding the Value of Volunteer Involvement

Science.gov (United States)

Terry, Bryan; Harder, Amy; Pracht, Dale

2011-01-01

Volunteers can be an important resource of many nonprofit organizations. The ability to meet the mission, goals and objectives of nonprofit organizations often depends upon the effectiveness of volunteer involvement in direct service delivery or indirect program support. Volunteer involvement utilizes financial and non-financial resources of an…

Young People Volunteering in Uganda

OpenAIRE

Riiser, Nina Milling

2011-01-01

Socio economic conditions in Uganda causes the youth to be caught between childhood and adulthood. They are young people moving towards adulthood, with no option of becoming independent. How does volunteering affect the youth and why does the youth volunteer? Does the youth get closer to adulthood by volunteering and what di they gain? Socio economic conditions in Uganda causes the youth to be caught between childhood and adulthood. They are young people moving towards adulthood, with no o...

45 CFR 1226.11 - Part time volunteers.

Science.gov (United States)

2010-10-01

... 45 Public Welfare 4 2010-10-01 2010-10-01 false Part time volunteers. 1226.11 Section 1226.11... SERVICE PROHIBITIONS ON ELECTORAL AND LOBBYING ACTIVITIES Volunteer Activities § 1226.11 Part time volunteers. (a) The provisions in this section are applicable to part time volunteers, as defined in § 1226.3...

Sensation seeking amongst healthy volunteers participating in phase I clinical trials.

Science.gov (United States)

Farré, M; Lamas, X; Camí, J

1995-01-01

1. Phase I clinical trials are usually carried out in healthy volunteers. In addition to economic gain, factors that may influence willingness to participate include scientific interest, curiosity and choice for risky activities. 2. We assessed the relationship between personality variables and volunteering for clinical pharmacology research. Two personality questionnaires, the Sensation Seeking Scale (SSS, form V) and the Eysenck Personality Questionnaire (EPQ), were administered to 48 male healthy university students who volunteered to participate in a phase I clinical trial and to 43 male university students who were not willing to participate in phase I clinical trials. General norm data were also used for the comparison of results. 3. When healthy volunteers were compared with unwilling subjects, significant differences were found in thrill-and-adventure seeking (7.9 vs 6.7, P = 0.0034), experience seeking (6.4 vs 5.2, P = 0.0012), disinhibition (6.2 vs 4.3, P personality profile of healthy volunteers was characterized by a higher sensation seeking trait and extraversion as compared with individuals who were not willing to participate in phase I clinical trials and general norm data. PMID:7640147

United States transuranium registry: Annual report, 1 October 1987--30 September 1988

International Nuclear Information System (INIS)

Swint, M.J.; Kathren, R.L.

1989-04-01

The primary objective this year was to initiate evaluation of Registry Case 246, an individual who had incurred the largest recorded human deposition of Am-241 as a result of a chemical explosion in a glove box. Because of the potential importance of this case, invitations for collaborative research were solicited from the scientific community. Other projects during the year included an international intercomparison of radiochemical analysis for actinides in tissue, a comparison of in-vivo and postmortem deposition estimates, a study of the fractionation of Am-241 and Pu-239+40 in skeleton and live, preliminary evaluation and modelling of the second whole body donation to the Registry, and a study of the distribution of actinides in lung and associated lymph nodes. The Registry was invited to participate in two international meetings during the year presenting evaluations and recommendations based on data gathered over more than 20 years of operation. A list of the papers presented at these meetings is included. 17 refs

Facilitating enrollment in a Cancer Registry through modified consent procedures: a pilot study.

Science.gov (United States)

Mazanec, Susan; Daly, Barbara; Meropol, Neal J; Step, Mary

2012-12-01

Research registries are increasingly important in medical research and are essential to the mission of cancer centers. However, designing enrollment and data collection procedures that are consistent with ethical norms and regulatory requirements yet are efficient and cost effective is a major challenge. Current standard consent forms can be a barrier to enrollment because of their length, multiple components, and technical language. We pilot tested an IRB-approved registry booklet and simplified one-page, tiered consent form, allowing for choice of extent of participation. The booklet was mailed to patients with breast cancer as part of their routine information packet prior to the first clinic appointment. A research nurse met with 27 patients at initial treatment to review the booklet, answer questions, obtain informed consent, and collect quality of life data. The consent rate was 78% with 21 patients enrolling in the study. Twelve of the 21 patients (57%) did not read the booklet prior to the visit. The 9 patients (43%) who had read the booklet prior to arrival found it easy to understand. The multi-stage, simplified consent process and data collection were acceptable to these patients and readily integrated into clinical operations. An easy-to-read registry booklet may be an effective guide for discussion, but in-person consent procedures and further testing of the approach are required.

Psychological characteristics of Swedish mandatory enlisted soldiers volunteering and not volunteering for international missions: an exploratory study.

Science.gov (United States)

Rydstedt, Leif W; Osterberg, Johan

2013-04-01

The purpose of this study was to assess personality traits, psychological fitness, and hardiness among conscript soldiers volunteering for international missions (n = 146), by comparing them with conscripts from the same year class and unit who did not apply for international missions (n = 275). The sample consisted of all mandatory enlisted soldiers assigned to a supply and maintenance regiment. There were no demographic differences between the groups. The volunteers reported greater stress tolerance, concern for others, extraversion, and self-confidence than the non-volunteers. There were no differences between the groups in orderliness, temper instability, or independence. Volunteers repeatedly reported greater psychological fitness for military missions and greater hardiness over the period of military service compared to the non-volunteers.

MVP: A Volunteer Development & Recognition Model.

Science.gov (United States)

Gerhard, Gary W.

This model was developed to provide a systematic, staged approach to volunteer personnel management. It provides a general process for dealing with volunteers from the point of organization entry through volunteer career stages to the time of exiting the organization. The model provides the structural components necessary to (1) plan, coordinate,…

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.…

America's Teenagers as Volunteers.

Science.gov (United States)

Knauft, E. B.

Two national in-home interview surveys conducted by the Gallup Organization and information from a national workshop conference attended by 70 teen volunteers from 28 states and 200 teachers and adult leaders indicate that about three-fifths of youth aged 12 to 17 volunteer an average of just over 3 hours a week. The most frequent volunteer…

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...

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,

What are the motivational needs behind volunteer work?

Science.gov (United States)

Danoff, A; Kopel, S

1994-01-01

Identification of an individual's motivational need and desired volunteer work enables volunteer administrators to capitalize on the motivation a person brings to the organization as well as to make effective use of the role by being cognizant of the levels of participation behind the differing volunteer assignments. The Motivation by Maslow Questionnaire was used to identify motivational needs of 35 helpline (crisis) volunteers, and three categories of volunteer work were used to classify their levels of participation. Implications for improving volunteer commitment to the formal voluntary organization and recruitment and retention strategies relative to volunteer motivational needs are discussed.

Organizational Support and Volunteering Benefits for Older Adults

Science.gov (United States)

Tang, Fengyan; Choi, Eunhee; Morrow-Howell, Nancy

2010-01-01

Purpose: This study tested a theoretical model of volunteering benefits and examined the mechanism through which volunteering benefits older adults. Design and Methods: This is a 2-wave study of 253 older adult volunteers serving in 10 volunteer programs. Older volunteers completed the mailed surveys in 2005 and 2006. Structural equation modeling…

THE INFLUENCE OF PERSONAL, SITUATIONAL AND ORGANIZATIONAL FACTORS ON VOLUNTEERS COMMITTEMENT

Directory of Open Access Journals (Sweden)

Marcela Sefora (SANA NEMTEANU

2015-11-01

Full Text Available Volunteerism as an activity in the context of non profit organizations aknowledged an increasing growth in Romania after the fall of comunism. Research in the nonprofit field is clustered around the identification ofinfluencial factors regarding volunteer involvement. Interest in academic research regarding non profit, third sector and non profit marketing gainedmore popularity in the last two decades. Theories of marketingapplicable in nonprofit sector are disscused, being adopted theorethical constructs from either sciences alsoas sociology, psychology, anthropology and organizational behavior schiences. General accepted conceptual and empirical constructs are not yet developed, which leads to the fact that study on influencial factors on volunteerism stillneeds to be developed and tested. The maininfluencial factors identified in the literature review cluster around personal, situational and organizational. Personal factors analysed were the socio-demographic, motivations, situational factors were cost and time oportunity, availability, experience in the field. On theother side organizational factors identified were charachteristics of the job, internal marketing and relationship with clients. Identified factors have influence on volunteer satisfaction regarding the activity in the organization and organizational commitement, increasing the retention of volunteers

Garrison Institute on Aging – Lubbock Retired and Senior Volunteer Program (RSVP Provides Services to South Plains, Texas

Directory of Open Access Journals (Sweden)

Joan eBlackmon

2015-12-01

Full Text Available The Texas Tech University Health Sciences (TTUHSC Garrison Institute on Aging (GIA was established to promote healthy aging through cutting edge research on Alzheimer ’s disease (AD and other diseases of aging, through innovative educational and community outreach opportunities for students, clinicians, researchers, health care providers, and the public. The GIA sponsors the Lubbock Retired and Senior Volunteer Program (RSVP. According to RSVP Operates Handbook, RSVP is one of the largest volunteer efforts in the nation. Through this program, volunteer skills and talents can be matched to assist with community needs. It is a federally funded program under the guidance of the Corporation for National and Community Service (CNCS and Senior Corps (SC. Volunteers that participate in RSVP provide service in the following areas: food security, environmental awareness building and education, community need-based volunteer programs, and veteran services.

Correcting for catchment area nonresidency in studies based on tumor-registry data

International Nuclear Information System (INIS)

Sposto, R.; Preston, D.L.

1993-05-01

We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

Underlying Motivations of Volunteering Across Life Stages.

Science.gov (United States)

Yamashita, Takashi; Keene, Jennifer R; Lu, Chi-Jung; Carr, Dawn C

2017-03-01

Volunteering is beneficial not only for individuals' well-being but also for society's well-being; yet only a fraction of U.S. citizens regularly engage in volunteer activities. This study examined how underlying motivations are associated with interest in volunteering for individuals in three major life phases: early, middle, and later adulthood. Data were collected from 1,046 adults who volunteered through nonprofit organizations in Nevada (USA). Exploratory factor analysis revealed that community service, career advancement, and well-being were common underlying motivations for individuals across life stages. However, generativity among the later adulthood group, and social networking among the early and middle adulthood groups were unique motivations for volunteering. Regression analysis showed that the community service motivation was significantly associated with individuals' interest in volunteering among all life stages. Simultaneously, generativity for the later adulthood group, and career advancement for the early adulthood group were unique motivations linked to their actual interest in volunteering.

[History of the cancer registry in Mexico].

Science.gov (United States)

Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

2011-01-01

A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.

Antecedents of Philanthropic Behavior of Health Care Volunteers

Science.gov (United States)

Alias, Siti Noormi; Ismail, Maimunah

2015-01-01

Purpose: This paper aims to propose a conceptual model of philanthropic behavior of volunteers in the health care sector. Design/methodology/approach: This study is based on an extensive review of past research on philanthropic behavior. To conduct the literature review, keywords such as philanthropy, philanthropic behavior, giving, donating,…

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.

Youth Sport Volunteering: Developing Social Capital?

Science.gov (United States)

Kay, Tess; Bradbury, Steven

2009-01-01

This paper analyses the capacity of youth sport volunteering to contribute to the development of social capital. Following a review of the emergence of social capital as a key theme in UK sport policy, the paper focuses on the ability of a structured sports volunteering programme to equip young people with skills for effective volunteering, and…

Volunteer vs. Professional Management of Academic Conferences: A Comparison of Five Meetings

Directory of Open Access Journals (Sweden)

James Spee

2007-06-01

Full Text Available Academic conferences operate under a range of models from nearly all volunteer to a mix of volunteer and professional event management. This paper compares the event management practices of five conferences: The Organizational Behavior Teaching Conference (OBTC, The Western Academy of Management (WAM, The North American Case Research Association (NACRA, The Academy of Management (AOM, and The Institute of Behavioral and Applied Management (IBAM The analysis will examine the mix of volunteer and professional management used to organize and operate the annual meeting of each organization separate from the program content; such as reserving the hotel, ordering meals, and offering special group events. Along a continuum, OBTC uses the least professional event management and IBAM uses the most. The other organizations fall somewhere in between. Professional event managers who organize conferences on a repeated basis have a distinct advantage over volunteers who change jobs every year, thereby losing large amounts of experiential learning. The all-volunteer organizations justify their choice of amateur event managers on the basis of lower up-front cost and "preserving our culture," but neglect to account for the wide variations in performance, lack of accountability, and burnout that can come with use of volunteers.

Characteristics of men with substance use disorder consequent to illicit drug use: comparison of a random sample and volunteers.

Science.gov (United States)

Reynolds, Maureen D; Tarter, Ralph E; Kirisci, Levent

2004-09-06

Men qualifying for substance use disorder (SUD) consequent to consumption of an illicit drug were compared according to recruitment method. It was hypothesized that volunteers would be more self-disclosing and exhibit more severe disturbances compared to randomly recruited subjects. Personal, demographic, family, social, substance use, psychiatric, and SUD characteristics of volunteers (N = 146) were compared to randomly recruited (N = 102) subjects. Volunteers had lower socioceconomic status, were more likely to be African American, and had lower IQ than randomly recruited subjects. Volunteers also evidenced greater social and family maladjustment and more frequently had received treatment for substance abuse. In addition, lower social desirability response bias was observed in the volunteers. SUD was not more severe in the volunteers; however, they reported a higher lifetime rate of opiate, diet, depressant, and analgesic drug use. Volunteers and randomly recruited subjects qualifying for SUD consequent to illicit drug use are similar in SUD severity but differ in terms of severity of psychosocial disturbance and history of drug involvement. The factors discriminating volunteers and randomly recruited subjects are well known to impact on outcome, hence they need to be considered in research design, especially when selecting a sampling strategy in treatment research.

FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome.

Science.gov (United States)

Sherman, Stephanie L; Kidd, Sharon A; Riley, Catharine; Berry-Kravis, Elizabeth; Andrews, Howard F; Miller, Robert M; Lincoln, Sharyn; Swanson, Mark; Kaufmann, Walter E; Brown, W Ted

2017-06-01

Advances in the care of patients with fragile X syndrome (FXS) have been hampered by lack of data. This deficiency has produced fragmentary knowledge regarding the natural history of this condition, healthcare needs, and the effects of the disease on caregivers. To remedy this deficiency, the Fragile X Clinic and Research Consortium was established to facilitate research. Through a collective effort, the Fragile X Clinic and Research Consortium developed the Fragile X Online Registry With Accessible Research Database (FORWARD) to facilitate multisite data collection. This report describes FORWARD and the way it can be used to improve health and quality of life of FXS patients and their relatives and caregivers. FORWARD collects demographic information on individuals with FXS and their family members (affected and unaffected) through a 1-time registry form. The longitudinal database collects clinician- and parent-reported data on individuals diagnosed with FXS, focused on those who are 0 to 24 years of age, although individuals of any age can participate. The registry includes >2300 registrants (data collected September 7, 2009 to August 31, 2014). The longitudinal database includes data on 713 individuals diagnosed with FXS (data collected September 7, 2012 to August 31, 2014). Longitudinal data continue to be collected on enrolled patients along with baseline data on new patients. FORWARD represents the largest resource of clinical and demographic data for the FXS population in the United States. These data can be used to advance our understanding of FXS: the impact of cooccurring conditions, the impact on the day-to-day lives of individuals living with FXS and their families, and short-term and long-term outcomes. Copyright © 2017 by the American Academy of Pediatrics.

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,...

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...

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 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.

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...

37 CFR 201.25 - Visual Arts Registry.

Science.gov (United States)

2010-07-01

... the copyright law. Visual Arts Registry Statements which are illegible or fall outside of the scope of... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25 Section 201.25 Patents, Trademarks, and Copyrights COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT OFFICE...

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.

Prioritizing Motivational and Satisfactorily Factors of Volunteer Medical and Health Personnel in Natural Disasters

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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.

Data Quality in Institutional Arthroplasty Registries: Description of a Model of Validation and Report of Preliminary Results.

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Bautista, Maria P; Bonilla, Guillermo A; Mieth, Klaus W; Llinás, Adolfo M; Rodríguez, Fernanda; Cárdenas, Laura L

2017-07-01

Arthroplasty registries are a relevant source of information for research and quality improvement in patient care and its value depends on the quality of the recorded data. The purpose of this study is to describe a model of validation and present the findings of validation of an Institutional Arthroplasty Registry (IAR). Information from 209 primary arthroplasties and revision surgeries of the hip, knee, and shoulder recorded in the IAR between March and September 2015 were analyzed in the following domains. Adherence is defined as the proportion of patients included in the registry, completeness is defined as the proportion of data effectively recorded, and accuracy is defined as the proportion of data consistent with medical records. A random sample of 53 patients (25.4%) was selected to assess the latest 2 domains. A direct comparison between the registry's database and medical records was performed. In total, 324 variables containing information on demographic data, surgical procedure, clinical outcomes, and key performance indicators were analyzed. Two hundred nine of 212 patients who underwent surgery during the study period were included in the registry, accounting for an adherence of 98.6%. Completeness was 91.7% and accuracy was 85.8%. Most errors were found in the preoperative range of motion and timely administration of prophylactic antibiotics and thromboprophylaxis. This model provides useful information regarding the quality of the recorded data since it identified deficient areas within the IAR. We recommend that institutional arthroplasty registries be constantly monitored for data quality before using their information for research or quality improvement purposes. Copyright © 2017 Elsevier Inc. All rights reserved.

REAC/TS Radiation Accident Registry: An Overview

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

2012-12-12

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

Motivation of Volunteers to Work in Palliative Care Setting: A Qualitative Study.

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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.

Chosen Aspects of Non‑Profit Sector and Volunteering in Slovakia

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Beata Gavurova

2017-01-01

Full Text Available The significance of voluntary activities in Slovakia constantly increases as it is one of the fundamental areas, which is of particular interest to chosen communities as well as the general public, with the scope of these activities exceeding religious or social groups and national character. The current situation of voluntary activities is not satisfactory and there is an absence of primary research studies that would provide a relevant and complex overview of the volunteering system. Further worsening the situation is the fact that volunteering actions were not even defined in the legal system until 2011. Evaluation of the existing situation and development of voluntary activities realized in Slovakia is carried out using a questionnaire survey, identifying the fundamental barriers of its development and evaluating the potential for implementing new challenges and trends. The most problematic issue is area of financing, closely related to non‑governmental sector financing issues. A lack of understanding by the donors concerning the process of investing in volunteers, even in high quality programs, is also an important problem, along with the lack of legislation and mistrust. Organization and volunteer motivation was also investigated.

Characteristics of volunteers and non-volunteers for voluntary counseling and HIV testing among unmarried male undergraduates.

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Adewole, D A; Lawoyin, T O

2004-06-01

The 2001 HIV sero-prevalence survey in Nigeria revealed a rate of 5.8 percent with those under the age of 25 years having the highest prevalence rate. Most University students fall within this age group. This study is part of a larger study on the sexual behavior of youths and young adults and was designed to compare the characteristics of volunteers and non-volunteers for voluntary confidential counseling and HIV testing (VCT) among males. Six hundred and nine male undergraduate students were randomly selected and enrolled for the study. Data were collected using a pre-tested questionnaire. Of the 609, 51 (8.3%) volunteered to have their blood screened for HIV. All volunteers who received pre-test counseling went for the HIV test. Volunteers were significantly older than the non-volunteers (Pmarriage pattern of their parents with regard to polygyny was similar, and fewer volunteers had fathers in the higher socio-economic class and mothers who had completed secondary education (Pcounseling. One of the three was positive for HIV. Of those who tested positive, 3 (37.5%) reported not using the condom at all, while the rest were using it only occasionally. VCT among the youths is possible however, small numbers encountered in the study is a limitation and there is a need to replicate this study using larger numbers. Tertiary institutions should provide VCT services for the students where they can be counseled appropriately and continuously throughout their stay in the institution. This hopefully will reduce the number of new HIV cases seen.