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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Publicado en:Orphanet J Rare Dis
Autores principales: Merkel, Peter A., Manion, Michele, Gopal-Srivastava, Rashmi, Groft, Stephen, Jinnah, H. A., Robertson, David, Krischer, Jeffrey P.
Formato: Artigo
Lenguaje:Inglês
Publicado: BioMed Central 2016
Materias:
Research
Acceso en línea: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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