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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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Bibliografski detalji
Izdano u:Orphanet J Rare Dis
Glavni autori: Merkel, Peter A., Manion, Michele, Gopal-Srivastava, Rashmi, Groft, Stephen, Jinnah, H. A., Robertson, David, Krischer, Jeffrey P.
Format: Artigo
Jezik:Inglês
Izdano: BioMed Central 2016
Teme:
Online pristup: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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