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Patient reported outcome measures in rare diseases: a narrative review

Abstract 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...

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Autors principals: Anita Slade, Fatima Isa, Derek Kyte, Tanya Pankhurst, Larissa Kerecuk, James Ferguson, Graham Lipkin, Melanie Calvert
Format: Artigo
Idioma:Inglês
Publicat: BMC 2018-04-01
Col·lecció:Orphanet Journal of Rare Diseases
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Accés en línia:http://link.springer.com/article/10.1186/s13023-018-0810-x
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