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Patient involvement in rare diseases research: a scoping review of the literature and mixed method evaluation of Norwegian researchers’ experiences and perceptions

BACKGROUND: Patients’ involvement (PI) in research is recognized as a valuable strategy for increasing the quality, developing more targeted research and to speed up more innovative research dissemination. Nevertheless, patient involvement in rare diseases research (PI-RDR) is scarce. The aims were:...

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Detalles Bibliográficos
Autores principales: Velvin, Gry, Hartman, Thale, Bathen, Trine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9158134/
https://www.ncbi.nlm.nih.gov/pubmed/35642001
http://dx.doi.org/10.1186/s13023-022-02357-y