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Queen Square Centre for Neuromuscular Diseases

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fshd-registry

UK FSHD patient Registry

Sponsor / Funder Muscular Dystrophy Campaign and TREAT-NMD Alliance
CI Professor Hanns Lochmüller
Sites Newcastle
More information

This is a national registry for all patients affected by facioscapulohumeral dystrophy (FSHD) living in the UK. It is a patient driven online registry launched in May 2013.

The registry collects a dataset in line with an international agreement. Patients fill research questionnaires collecting information about pain, quality of life and scapular fixation.

Primary objective

To facilitate the planning, design and recruitment of clinical research.