The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
Recruiting
Observational Study
Facioscapulohumeral Muscular Dystrophy
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 1,018 (estimated)
- Sponsor
- Newcastle University · Other
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About This Trial
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 i…
Trial Locations
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Eligibility Criteria
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
Contacts