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The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

Recruitingn/aAges any - anyAllNewcastle University
NCT04001582 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

Facioscapulohumeral Dystrophy (FSHD) is the third most common form of neuromuscular dystrophy worldwide with an estimated prevalence of one in 20,000. FSHD is an autosomal dominant genetic disease and is estimated to affect up to 3,000 people in the UK. The patient registry facilitates a questionnaire based research study to better characterise and understand the disease in the UK, and helps to identify potential participants eligible for clinical trials.

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📋 Eligibility rules (as published)
Inclusion Criteria: \- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion. Exclusion Criteria: * Any confirmed NMD other than FSHD * Living outside of the UK
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What it tests

  • Patient Registry
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Where

1 site
John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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