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Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey

BACKGROUND: Individuals and/or caregivers of individuals affected by spinal muscular atrophy (SMA) completed the 2019 Cure SMA Community Update Survey, online, assessing health-related quality of life (HRQoL), loss of work productivity, and fatigue using the Health Utilities Index Questionnaire (HUI...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Belter, Lisa, Cruz, Rosángel, Jarecki, Jill
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2020
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC7447573/
https://ncbi.nlm.nih.gov/pubmed/32838797
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01498-2
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