The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
The UK Facioscapulohumeral Muscular Dystrophy Patient Registry
Newcastle University
1,018 participants
May 1, 2013
OBSERVATIONAL
Conditions
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
Plain Language Summary
Simplified for easier understanding
This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.
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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