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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Veröffentlicht in:Orphanet J Rare Dis
Hauptverfasser: Slade, Anita, Isa, Fatima, Kyte, Derek, Pankhurst, Tanya, Kerecuk, Larissa, Ferguson, James, Lipkin, Graham, Calvert, Melanie
Format: Artigo
Sprache:Inglês
Veröffentlicht: BioMed Central 2018
Schlagworte:
Review
Online Zugang: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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