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Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review

BACKGROUND: Patients and their families have become more active in healthcare systems and research. The value of patient involvement is particularly relevant in the area of rare diseases, where patients face delayed diagnoses and limited access to effective therapies due to the high level of uncerta...

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Podrobná bibliografie
Vydáno v:Orphanet J Rare Dis
Hlavní autoři: Young, Andrea, Menon, Devidas, Street, Jackie, Al-Hertani, Walla, Stafinski, Tania
Médium: Artigo
Jazyk:Inglês
Vydáno: BioMed Central 2017
Témata:
On-line přístup:https://ncbi.nlm.nih.gov/pmc/articles/PMC5741909/
https://ncbi.nlm.nih.gov/pubmed/29273068
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-017-0738-6
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