A patient-centered qualitative evaluation of meaningful change on the NSAA and PUL in Duchenne Muscular Dystrophy

A patient-centered qualitative evaluation of meaningful change on the NSAA and PUL in Duchenne Muscular Dystrophy

BackgroundDuchenne Muscular Dystrophy (DMD) is a rare X-linked genetic disorder caused by mutations in the dystrophin gene. The North Star Ambulatory Assessment (NSAA) and Performance of Upper Limb (PUL) are used to measure motor performance in ambulatory and non-ambulatory individuals, respectively...

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Bibliographic Details
Main Authors: Aviva Gillman, Teofil Ciobanu, Louise Barrett, Evan W. Davies, Alexander P. Murphy, Alex Johnson, Jessica Mills, Phoebe Heinrich, Krystian Przydzial, Bethany Ewens, Gerrit Vandenberg, Stefan Cano, Anna Mayhew
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-03-01
Series:Frontiers in Neurology
Subjects:
Duchenne Muscular Dystrophy
patient-reported outcomes
qualitative research
rare disease
meaningful change
Online Access:https://www.frontiersin.org/articles/10.3389/fneur.2025.1509174/full
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https://www.frontiersin.org/articles/10.3389/fneur.2025.1509174/full

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