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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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| Publicado no: | Orphanet J Rare Dis |
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| Main Authors: | , , , , , , |
| Formato: | Artigo |
| Idioma: | Inglês |
| Publicado em: |
BioMed Central
2016
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| Assuntos: | |
| Acesso em linha: | 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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