Actively Recruiting
The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
Led by Newcastle University · Updated on 2024-05-09
1018
Participants Needed
1
Research Sites
1391 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.
You will not qualify if you...
- Any confirmed neuromuscular disease other than FSHD
- Living outside of the UK
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom, NE1 3BZ
Actively Recruiting
Research Team
R
Registry Project Manager and Curator
CONTACT
R
Registries Team
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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