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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Dettagli Bibliografici
Pubblicato in:Orphanet J Rare Dis
Autori principali: Merkel, Peter A., Manion, Michele, Gopal-Srivastava, Rashmi, Groft, Stephen, Jinnah, H. A., Robertson, David, Krischer, Jeffrey P.
Natura: Artigo
Lingua:Inglês
Pubblicazione: BioMed Central 2016
Soggetti:
Research
Accesso online: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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