The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

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...

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Detalles Bibliográficos
Publicado en:Orphanet J Rare Dis
Main Authors: Merkel, Peter A., Manion, Michele, Gopal-Srivastava, Rashmi, Groft, Stephen, Jinnah, H. A., Robertson, David, Krischer, Jeffrey P.
Formato: Artigo
Idioma:Inglês
Publicado: BioMed Central 2016
Assuntos:
Research
Acceso en liña:https://ncbi.nlm.nih.gov/pmc/articles/PMC4870759/
https://ncbi.nlm.nih.gov/pubmed/27194034
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-016-0445-8
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