Research Advocacy Network: Advancing Patient-Focused Research
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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ژورنال
عنوان ژورنال: Journal of Oncology Practice
سال: 2007
ISSN: 1554-7477,1935-469X
DOI: 10.1200/jop.0735002