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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| Auteurs principaux: | , , , , , |
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| Format: | article |
| Langue: | EN |
| Publié: |
BMC
2021
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| Sujets: | |
| Accès en ligne: | https://doaj.org/article/5adabc4ef23b4480bcb66f6b4683aadc |
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