Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks

BACKGROUND: Person-reported outcomes measurement development for rare diseases has lagged behind that of more common diseases. In studies of caregivers of patients with rare diseases, one relies on proxy report to characterize this disability. It is important to measure the child’s disability accura...

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Detalles Bibliográficos
Autores principales: Schwartz, Carolyn E., Stark, Roland B., Cella, David, Borowiec, Katrina, Gooch, Katherine L., Audhya, Ivana F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8607700/
https://www.ncbi.nlm.nih.gov/pubmed/34809687
http://dx.doi.org/10.1186/s13023-021-02114-7

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8607700/
https://www.ncbi.nlm.nih.gov/pubmed/34809687
http://dx.doi.org/10.1186/s13023-021-02114-7

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