DMD Upper Limb PROM
Patient Reported Outcome Measure Upper Limb for patients with Duchenne Muscular Dystrophy
Brief description
- DMD UL PROM is a patient reported outcome measure specifically designed to document upper limb performance in daily life in boys and young men with dystrophinopathies, from childhood to adulthood.
- The questionnaire is recommended from 7 years of age onwards.
- It can be completed by the individual himself or his parent/caregiver.
We recommend having it completed by the parent/caregiver up to the age of 16 years.
Languages
Currently available in
- English
- Italian
- Dutch
Background
The DMD Upper Limb PROM is the result of an international collaborative work of the Upper Limb Working Group * and funded by Duchenne Parent Project Netherlands.
The DMD UL PROM was developed following guidelines published by the US Food and Drug Administration. Applied modern psychometric methods in conjunction with specialist clinical knowledge, patient and family feedback has ensured that the DMD-Upper Limb PROM is not only disease and population specific but also assesses clinically meaningful upper limb function in this population. The main purpose of this questionnaire is to describe patient self-reported Natural History in DMD and to assess the efficacy of interventions in daily life.
Reference
Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM.
Klingels K, Mayhew AG, Mazzone ES, Duong T, Decostre V, Werlauff U, Vroom E, Mercuri E, Goemans NM; Upper Limb Clinical Outcome Group.
Dev Med Child Neurol. 2017 Feb;59(2):224-231. doi: 10.1111/dmcn.13277.
Cost structure for the use of the DMD Upper Limb PROM
- Clinical use: free of charge
- Not funded academic research: free of charge
- Funded academic research (other than funded by industry): €500 License fee per study

- Commercial use (Pharmaceutical Industry, CRO, any for-profit companies)
License fee for study including
<10 centres €5.000
10-20 centres €10.000
> 20 centres €15.000
Changes in the DMD Upper Limb PROM are not allowed. Not to be reproduced without permission.
Copyright © 2016 Parent Project Productions. All rights reserved.
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