Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM.

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Abstract

To develop a patient-reported outcome measure (PROM) assessing upper limb function related to activities of daily living (ADL) that cannot be observed in a clinical setting, specifically for patients with Duchenne muscular dystrophy (DMD) across a wide age range, applicable in the different stages of the disease.

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Journal

Journal ID (iso-abbrev): Dev Med Child Neurol

Title: Developmental medicine and child neurology

Publisher: Wiley-Blackwell

ISSN (Electronic): 1469-8749

ISSN (Print): 0012-1622

Publication date (Electronic): Feb 2017

Volume: 59

Issue: 2

Affiliations

[1 ] Department of Rehabilitation Sciences, KU Leuven, Leuven, Belgium.

[2 ] Rehabilitation Research Center (REVAL), Biomed, Hasselt University, Diepenbeek, Belgium.

[3 ] John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle upon Tyne, UK.

[4 ] Department of Paediatric Neurology, Catholic University, Rome, Italy.

[5 ] Department of Neurology, Stanford University School of Medicine, Stanford, CA, USA.

[6 ] Institut de Myologie, GH Pitié Salpêtrière, Paris, France.

[7 ] Danish National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.

[8 ] Duchenne Parent Project, Veenendaal, the Netherlands.

[9 ] Department of Child Neurology, University Hospitals Leuven, Leuven, Belgium.

Article

DOI: 10.1111/dmcn.13277

PubMed ID: 27671699

SO-VID: c61e9d84-1481-4607-b319-991c21e9bd52

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