The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
The UK Facioscapulohumeral Muscular Dystrophy Patient Registry
Newcastle University
1,018 participants
May 1, 2013
OBSERVATIONAL
Summary
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.
Eligibility
Inclusion Criteria1
- \- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.
Exclusion Criteria2
- Any confirmed NMD other than FSHD
- Living outside of the UK
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Interventions
Participants who have volunteered to participate will complete various questionnaires relating to their condition.
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT04001582