Cystinosis research network – a patient advocacy group
نویسندگان
چکیده
منابع مشابه
Patient Advocacy in Research
In 20 years of breast cancer advocacy, I’ve witnessed major changes in attitude toward advocates on the part of basic researchers, clinical investigators, and others involved with the science of the disease. Not so long ago, even a seat at the table – much less a vote –was hard to come by. Advocate presence was met with puzzlement, if not outright resistance. How could we possibly understand th...
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BACKGROUND Among the unique features of the Rare Diseases Clinical Research Network (RDCRN) Program is the requirement for each Consortium to include patient advocacy groups (PAGs) as research partners. This development has transformed the work of the RDCRN and is a model for collaborative research. This article outlines the roles patients and PAGs play in the RDCRN and reports on the PAGs' imp...
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In Basic Interests: The Importance of Groups in Politics and in Political Science (1998), Frank Baumgartner and Beth Leech characterized a series of problems in the interest group research published between 1950 and 1995. In this article, we assess whether recent research has becomemore theoretically coherent, more attentive to context, and broader in both scope and topical focus, all of which ...
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Background and Purpose: One of the most important elements of nursing ethics is patient advocacy, which instills patients’ sense of independence and autonomy. Nurses’ perceptions of this concept can significantly influence their advocacy role. Therefore, in this study, we aimed to assess nurses’ perceptions about this phenomenon. Methods: In this cross-sectional study, 385 nur...
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THE TERM advocacy has appeared in nursing literature for almost two decades (Hewitt 2002, Mallik 1997). Much of the literature has attempted to legitimise and encompass patient advocacy in the role of the nurse. However, reservations about the suitability of the nurse to act as patient advocate have also been expressed (Allmark and Klarzynski 1992, Copp 1986, Walsh 1985). Advocacy first appeare...
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ژورنال
عنوان ژورنال: Expert Opinion on Orphan Drugs
سال: 2013
ISSN: 2167-8707
DOI: 10.1517/21678707.2013.819290