Patient reported outcome measures in rare diseases: a narrative review

BACKGROUND: Rare diseases can lead to a significant reduction in quality of life for patients and their families. Ensuring the patients voice is central to clinical decision making is key to delivering, evaluating and understanding the efficacy of therapeutic interventions. Patient reported outcome...

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Bibliografiske detaljer
Udgivet i:Orphanet J Rare Dis
Main Authors: Slade, Anita, Isa, Fatima, Kyte, Derek, Pankhurst, Tanya, Kerecuk, Larissa, Ferguson, James, Lipkin, Graham, Calvert, Melanie
Format: Artigo
Sprog:Inglês
Udgivet: BioMed Central 2018
Fag:
Review
Online adgang:https://ncbi.nlm.nih.gov/pmc/articles/PMC5914068/
https://ncbi.nlm.nih.gov/pubmed/29688860
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-018-0810-x
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