Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks
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 charact...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Carolyn E. Schwartz, Roland B. Stark, David Cella, Katrina Borowiec, Katherine L. Gooch and Ivana F. Audhya Tags: Research Source Type: research
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