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Updated: May 23, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
DuchenneConnect Registry Report
Vanessa Rangel1, Ann S Martin, Holly L Peay
1VP Genetic Services, PatientCrossroads; DuchenneConnect Coordinator, Parent Project Muscular Dystrophy and Senior Director, Parent Project Muscular Dystrophy.
Abstract:
Research activity in Duchenne/Becker muscular dystrophy has surged in recent years, requiring robust information networks to support ongoing development. Established by Parent Project Muscular Dystrophy in late 2007, DuchenneConnect was created to bridge the information gap between care providers, researchers and the patient community, thereby addressing medical care needs and accelerating the pace of therapeutic advancements. This report represents the first in a new series that will be regularly shared by DuchenneConnect and PPMD. Data in this report was collected through June 2011.
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