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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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Dades bibliogràfiques
Publicat a:Orphanet J Rare Dis
Autors principals: Slade, Anita, Isa, Fatima, Kyte, Derek, Pankhurst, Tanya, Kerecuk, Larissa, Ferguson, James, Lipkin, Graham, Calvert, Melanie
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2018
Matèries:
Accés en línia: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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