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

Abstract 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 disabilit...

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Autores principales: Carolyn E. Schwartz, Roland B. Stark, David Cella, Katrina Borowiec, Katherine L. Gooch, Ivana F. Audhya
Formato: article
Lenguaje:EN
Publicado: BMC 2021
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Acceso en línea:https://doaj.org/article/5adabc4ef23b4480bcb66f6b4683aadc
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